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Multiple Chemical Sensitivity: Separating facts from fiction

gas-mask

One of the challenges to providing science-based medicine is managing debilitating symptoms in patients who lack a clear diagnosis. If a comprehensive workup on an ill patient reveals nothing conclusive, patients and their health care providers are equally puzzled and frustrated. A diagnosis is seen as giving legitimacy to symptoms, and can be the first step towards defining a science-based treatment plan. Vague or “medically unexplained” symptoms are among the most difficult therapeutic challenges. To patients, the science and profession of medicine has failed to “deliver” and the patient can be left feeling their condition lacks legitimacy. These patients are at the greatest risk for alternative medicine approaches, such as unorthodox diagnoses and treatments. In this world, the lack of objective evidence is no barrier to defining conditions and their treatments. One of the most problematic tactics used is the attribution of these symptoms to conditions known as fake diseases.

A “fake disease” doesn’t mean a patient’s symptoms aren’t real, or that they’re not suffering. Patients aren’t “faking” their symptoms. A “fake disease” means that the difficult work confirming the relationship between specific symptoms and an objective diagnosis is lacking. I’ve written about the fake disease called “adrenal fatigue” before. Steven Novella and Peter Lipson have examined a condition called Morgellons. Peter Lipson and Harriet Hall have discussed “chronic” Lyme disease at length. While different in how they are described, all fit the description of a fake disease. A real disease can be proven false or ruled out: There are objective ways to show someone does not actually have the disease. That’s not possible with fake diseases. They have a number of features in common:

  • A lack of scientific consensus on what the “disease” actually is.
  • A lack of scientific consensus on establishing who actually has the condition (and who does not).
  • Symptoms may be non-specific and common (e.g., headache), and there may be no objective differences from those without the condition.
  • A lack of objective evidence to establish a cause.
  • A reliance on unorthodox or unvalidated diagnostic techniques (e.g., food “intolerance” testing)
  • A reliance on unorthodox, unvalidated, or clinically useless treatments (e.g., colon flushing; dental amalgam removal)

The special pleading for fake disease

A recent series of articles in the medical journal Canadian Family Physician make the case for the existence of “multiple chemical sensitivity”, also known as “idiopathic environmental intolerance” (MCS/IEI), going so far as to call it a pandemic, using the terms “multimorbidity with sensitivities” and “idiopatic multimorbidity”. A close examination of the arguments and evidence presented in the “commentary” is nothing more than a special pleading for the scientific legitimacy of the condition, starting with the argument that we’re all toxic:

Just as accrued toxic compounds originating from cigarette exposure are a well established cause of various health conditions, myriad toxicants originating from many other day-to-day exposures are now bioaccumulating in people and causing a multitude of health conditions.21 To facilitate convenience, comfort, safety, and efficiency, there has been the manufacture and release of many thousands of untested synthetic chemicals over the past few decades. Extensive evidence published in various scientific and public health journals has recently verified that individuals from many population groups have experienced exposure to and bioaccumulation of numerous chemical toxicants from the air they breathe, from the food and drink they ingest, from vertical transmission, from dermal exposure, and from compounds injected or implanted into the body. Furthermore, the emerging field of nanotoxicology, a new discipline exploring the potential biochemical havoc resulting from exposure to some nanoparticles,22,23 has served to bring further attention to the expanding realm of potential toxicants. But just as the exposure problem from cigarettes, which was initially described by Delarue in the 1940s,24 was ignored for many years, the current exposure problem from innumerable domestic and occupational sources is also being ignored by many clinicians despite irrefutable and extensive evidence.

And yet, the author fails to actually present any irrefutable evidence at all. The rest of the column is a selection of cherry-picked citations that paint the picture of a civilization increasingly toxic, with some individuals manifesting an array of vague symptoms. It’s a paper more suited to Medical Hypotheses, rather than a supposedly peer-reviewed journal for primary care physicians:

A foray into the recesses of the scientific literature reveals discussion of a condition called sensitivity-related illness34 (SRI), with description of a credible causal mechanism39 to account for much of the emerging pandemic of multisystem health problems.40 This condition results when toxicant accrual within the human organism—typically from exposure to adverse chemicals—induces a state of immune dysregulation and hypersensitivity resulting in physiological disruption within various organ systems.4143 The pathogenesis relates to an intriguing phenomenon called toxicant-induced loss of tolerance,41,44 a finding that represents a considerable advance in medical science pertaining to the origins and mechanisms of disease.

There is a notable lack of any reference to a systematic review or even to any objective evidence at all. The literature search described (which includes the phrase “several books”) is laughably non-systematic, and the cherry-picking is evident. A comprehensive literature search would have identified that there is a lack of connection between the exposure to environmental agents and the onset of MCS/IEI symptoms. Furthermore, provocation studies that have evaluated those with MCS/IEI have failed to establish any relationship between active chemical exposure and placebo.

The second column from the same author, a “clinical review”, clearly demonstrates the unorthodox diagnostic approaches and treatments used in patients with MCS/IEI (and also called sensitivity-related illness, or SRI):

A 59-year-old rabbi experienced episodic headache, dizziness, and muscle discomfort beginning in adolescence. Into adulthood, these symptoms became more frequent and manifestations expanded to include episodic vision and hearing loss, inexplicable rashes, memory impairment, ataxia, profound agitation, and eventual blackouts. He also complained of intractable fatigue, insomnia, recurrent wheezing, musculoskeletal discomfort, and cognitive dysfunction.
The patient saw multiple physicians, but no physiologic cause for his multimorbidity was identified. Various diagnoses were given, but a subsequent psychiatric assessment conferred a diagnosis of “narcissistic, borderline personality disorder with extreme anxiety” to explain the totality of his presentation. As analgesic, asthma, and allergy medications provided minimal sustained benefit, psychotropic medication was employed but to no avail.

The treatment? Detoxify, of course:

The patient’s presentation was consistent with a diagnosis of SRI. Removal of inciting agents was meticulously carried out. In the early stages, the patient initially wore a filter mask designed to preclude particulate and volatile exposures both indoors and outdoors as required. The indoor air environment was initially addressed through a home inventory and associated high-efficiency particulate air filtration. Professional mold remediation was undertaken and follow-up mold testing was clear. Commercial scents, perfumes, and fresheners were eliminated. Common food triggers such as gluten, casein, refined fructose, nightshades, artificial sweeteners, and flavouring agents were temporarily eliminated from the diet.22
With these measures, the patient’s symptoms began to abate steadily and attention was directed to remediating his nutritional biochemistry.49 An organic, traditional whole food diet to minimize further toxicant and pesticide or herbicide exposure was implemented, along with directed supplementation to target specific biochemical deficiencies. With ongoing improvement, elimination of his total toxicant burden was commenced.
Amalgam removal employing exposure precautions and safe replacement materials was systemically done by a dental professional.5052 A saline nasal rinse with sodium bicarbonate was used for 3 weeks to eliminate residual mold from the sinus area, and detoxification measures were used to facilitate removal of residual mycotoxin.53 General measures to facilitate toxicant elimination were undertaken, including exercise and regular transdermal depuration.25,54,55 High serum levels of trans fatty acid were addressed with dietary counseling.

Regular readers of SBM will recognize the treatment regimen as lacking a sound evidence base. So what are the facts of MCS, and what’s actually known about the treatments?

The facts of multiple chemical sensitivity/idiopathic environmental intolerance

MCS and IEI are used to describe a condition with the following general characteristics:

  • Those affected report “sensitivities” or “allergies” to multiple products in the environment.
  • There are recurrent, non-specific symptoms reported to low levels of exposure.
  • There is a lack of objective evidence or laboratory findings that define any specific illness.

Reactions can be quite debilitating to those that report symptoms of MCS – some even wear masks in public (like the one illustrated above). MCS was originally called “clinical ecology” which became MCS, and is also called IEI, to reflect the fact that any actual sensitivity to any chemical has not been established. The most commonly reported sensitivities are to products like perfumes, scented products, pesticides, solvents, “off-gassing” of products like carpets and plastics. Other contributors include food additives, dental fillings, and sometimes even electromagnetic waves. Candida is sometimes included as a toxin that also causes sensitivities.

The idea of MCS/IEI is not implausible. People could conceivably react in a strongly negative way to small exposures to a chemical irritant. However, scientific investigations fail to show a consistent or repeatable pattern of effects. Reactions to noxious chemicals can vary but usually cause symptoms like headache, fatigue, confusion, depression, and muscle/joint pain. There is no specific set of symptoms that establishes MCS or can clearly distinguishes it from syndromes like fibromyalgia. There are no established laboratory tests that can diagnose MCS. No biochemical model has been shown to cause MCS. Chemical sensitivities have been ruled out owing to chemical challenges that cause symptoms only in the absence of proper blinding. Consequently, the chemicals commonly blamed for MCS have not been shown to actually cause the symptoms of the condition.

MCS is not recognized as a distinct clinical entity in any country (with the exception of Germany and Austria) given the lack of confirmed physical effects and the lack of clear diagnostic criteria. Consequently, a diagnosis is currently based completely on self-reported symptoms.

Despite the relationship between symptomatic findings and investigations, unorthodox treatments offered for MCS range from dietary interventions to supplements and detoxification/desensitization approaches – many of which are described in the paper above. There is no objective evidence that the detoxification strategies purported by advocates improve health or address the problem. Science-based treatments are limited. Given the high prevalence of psychiatric comorbidity found with MCS, a relationship has been postulated, and treatments for conditions like anxiety or depression, with counselling like cognitive behavioural therapy (CBT) and sometimes drug treatments may be offered.

Position statements and scientific reviews on MCS/IEI

Consensus statements and other documents from medical and government agencies are in no way definitive guides to the evidence. However, they can offer a general overview of the literature, often with discussion of contrary (or unorthodox) perspectives. The most recent comprehensive summary was published in 2010 by the Australian government’s Department of Health and Ageing, entitled “Multiple Chemical Sensitivity, Identifying key research needs” [PDF]. It noted:

  • Insufficient evidence exists in the literature for benefit from any medication, dietary supplements or other therapies despite support for some of the treatments by some clinicians at their interviews or in response to the questionnaire.
  • People with the symptoms associated with MCS run a variable course but for most, MCS is a chronic condition.
  • The basic management involves engaging with the patient and maintaining a long-term supportive relationship whilst encouraging self-management as with all chronic illness.
  • Self-management involves providing the patient with information about the nature of the problems being experienced and guidelines regarding symptom management.
  • Clinicians need to accept the patient’s issues as a debilitating and disabling illness irrespective of whether the clinician recognises or accepts the presence of a specific entity, in order to avoid the patient seeking unnecessary referrals and harmful or costly treatment of unproven benefit.

The appendix to the document contains a summary of the views of governments and professional medical organizations. They include the American Academy of Allergy, Asthma and Immunology (AAAAI) which noted (in 1999) an absence of scientific evidence for any particular mechanism for the aetiology and production of symptoms in MCS and the lack of any immunological or neurological abnormalities in MCS subjects. Causal connections between environmental chemicals, foods and/or drugs and MCS symptoms “continue to be speculative”.

Conclusion

MCS is a debilitating but subjective condition attributed to exposure to a variety of chemical, biologic and other agents. While it not a distinct medical condition, those that suffer from MCS are heavy consumers of health care, and may devote considerable personal resources to managing their condition. MCS patients suffer – not only from a lack of clearly effective treatments, but also by being prey to purveyors of pseudoscience and quackery. Unproven diagnostic testing is common, particularly among alternative health providers and even medical doctors, many of whom claim a specialty in “environmental medicine” or “clinical ecology”. These practitioners attribute patient symptoms to a disease that doesn’t exist. Despite the claims by proponents, there are no clear diagnostic criteria for MCS, owing to the lack of connection between exposure to chemical triggers and reported symptoms. There is no objective evidence to demonstrate that commonly used “detoxification” methods for MCS have any meaningful effects. Consequently, there is no credible scientific justification for these treatments. Recent papers published in Canadian Family Physician fail to properly present a science-based perspective on MCS, and, by uncritically profiling pseudoscientific and unproven treatments, do a disservice to patients that suffer from this condition.

Despite the evidence, claims of MCS can be firmly held. Given the lack of objective symptoms and diagnostic criteria, science-based treatment focuses on active collaboration with patients to acknowledge symptoms, rule out serious medical issues (including objective physical illness), improve self-management techniques, and address any other conditions. As science-based practitioners, the best we may be able to offer is to treat with compassion, give facts instead of false hope, and equip our patients to identify and avoid quackery and their purveyors.


Photo from flickr user flahertyb used under a CC licence.

Posted in: Science and Medicine

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299 thoughts on “Multiple Chemical Sensitivity: Separating facts from fiction

  1. Frederick says:

    Good article

    The proponent of MCS are like the ones who are scare of EMF, once they are in, it is like a cult.
    Some of those symptoms are maybe psychosomatic? If they are, it must be hard to tell a patient that it is the case, he will take that as a accusation of “faking”. Like EMF I think some peoples are sincere in the suffering, but the cause is their brain, not EMF or chemicals.
    Could it be that some of them suffer form anxiety of some sort? and their anxiety manifest itself as those symptoms? ( anecdote ahead) My Wife is a anxious person, her medication helps a lot, but when she feel bad, she have pain and feel weird. But she’s not gullible, and she is well inform, but some Persons don’t want to believe they have psychological problem and want to find the sources, it is understandable, but some pseudo-science scaremonger capitalize on that to push non existing condition into their mind. And once they are a in, it is hard to tell them they are wrong.

    1. KayMarie says:

      I think anxiety or other issues like that may play a big role in this.

      Unfortunately with the stigma attached to mental/brain based illnesses a lot of people will do anything to ensure that something other than that is entirely responsible for the problem and nothing in the mind has anything to do with making them better.

      That and people have the initial reaction of “the doctor thinks it is all in my head” and feels they are being accused of making it up rather than finding out that some of the treatments the doctor might be proposing have some chance of working. I’ve done biofeedback for migraines which usually allows me to function through them without meds and Cognitive Behavioral Therapy as part of a decent sized clinical trial for a painful condition I have. So what goes on between my ears seems to anecdotally have a big effect on symptoms (and I propose both in the intensifying symptoms as well as the relieving them). In the CBT study usually the people without a psychological diagnosis (so normal human insanity) did better. I think that may be because anxiety or depression just makes it really hard to do the work to weed through what is intensifying things and what might actually help the body to calm it down.

      1. WilliamLawrenceUtridge says:

        This is a pretty huge and underappreciated area where psych can help too – even if you don’t know what your symptoms are caused by, even if they’re purely mental or biochemical, there is always a place for talking to a therapist to figure out how you are going to cope, what the symptoms and the limitations they impose mean to you, and how you can be the happiest you can be within your new context. And if that leads to finding out it was indeed a psychogenic illness, great! If not, you’re still mentally better-equipped to handle your new situation.

        1. DW says:

          Believe me, that is NOT the way a psychosomatic sufferer reasons. You present a rational response, but these situations aren’t rational at all. If you suggest therapy or counseling to a psychosomatic sufferer, they are generally enraged.

          1. WilliamLawrenceUtridge says:

            I realize, I hope that framing it as “I can’t do anything and they might be able to help you accommodate your new limitations” might make it acceptable. But you’re probably right that it doesn’t matter what you say. I argued for a very long time with someone about chronic fatigue syndrome – the amazing thing being how much energy he had to argue with me despite being so very tired. I find myself agreeing with Victor Lewis-Smith on the matter.

            1. autistic-adult says:

              Hey, I wasn’t going to respond to this, but I feel like I need to say something because you’re making some incorrect assumptions here.

              I personally have fibromyalgia, and I know a few people with CFS. We tend to hang out in the same online spaces because the symptoms of both conditions are kind of similar and we can sympathize with each other and give each other advice. From what I understand- and I could be wrong, I’m not a doctor or a scientist, or even an employee- a lot of the time “chronic fatigue syndrome” is a diagnosis given to men who have fibromyalgia-esque symptoms, because a lot of people think fibro is a disease only women can have.

              The first thing you need to understand is that diseases like fibromyalgia and CFS aren’t a consistent state of feeling like garbage. They’re kind of like gout, where it gets better and worse. Sometimes you’ll feel like a human being, and sometimes you will feel like a gigantic pile of elephant dung. I’ll admit this is at least partly tied to psychological condition- stress, depression, and anxiety, among other things, make the probability that you will have an “elephant dung” day higher. But the fact remains that when you have a condition like this, some days you will have more energy than others.

              Just because someone who has a condition like fibro has a lot of energy on a given day doesn’t mean they’re “faking it”; it means that you haven’t seen them on a day when they are literally unable to get out of bed to walk to the refrigerator. Both kinds of days happen.

              Another thing: was it an argument on the internet, or face to face? Internet arguing, for me, is actually something I do when I’m almost completely out of energy; if I don’t have the juice to do anything else, I will trawl around Omegle and yell about feminism. It’s not actually a meaningful conversation 99% of the time, but it keeps my brain occupied while my spine and joints try to secede from my body and form the United States of Painful Bullcrap. The argument you got in with this guy could very well have been of the same variety.

              I get really tired (pun not intended) of people saying that because they can’t see any physical symptoms of me being sick, I must not actually be sick. Sure, I’m sick and tired when I’m at work. I’m also sick and tired when I’m at home in my pajamas playing video games, or when I’m hanging out with friends, or when I’m on the train up to the city to visit my therapist.

              I have to plan my life like a military campaign to make sure I don’t wear myself out to the point of uselessness. I have to avoid just about everything that could tire me out that isn’t strictly necessary for my survival- and this includes things I want to do, like “going to the SCA fights once a week” and “going out of town to see a friend for a week, without taking a week after to recover.”

              It’s not “malingering”; it’s a genuinely disabling condition. And if you say otherwise, I’m going to have to strongly disagree.

              1. WilliamLawrenceUtridge says:

                Just because someone who has a condition like fibro has a lot of energy on a given day doesn’t mean they’re “faking it”; it means that you haven’t seen them on a day when they are literally unable to get out of bed to walk to the refrigerator. Both kinds of days happen.

                I would never say such a person was faking it (though I’m sure there are some people who do pursue a diagnosis of FM or CFS without actually having it). The question that mostly seems to consume people is “what causes it” (I’m speaking more of CFS here)? Many wish it to be purely physical, a lot seem to think it is a post-infective state, to the point that they refer to it as “chronic fatigue immune deficiency syndrome”. Some researchers definitely think it has a strong psychogenic component. The reality is, nobody knows exactly what CFS or FM are, whether they are purely physiological, purely psychological, or a mixture of both. The diagnostic criteria are too vague, and the research is too limited. It is a diagnosis of exclusion (again, CFS, I don’t know enough about FM) and therefore a diagnosis that will inevitably gather people with different things causing their fatigue. This is unfortunate, as it impairs research and treatment, but it’s also currently intractable. That is the reality.

                I get really tired (pun not intended) of people saying that because they can’t see any physical symptoms of me being sick, I must not actually be sick.

                Again, I would never argue this point, but I would argue that currently there is no known cause for FM, and no consistently-successful treatment. Your complaint applies for all “invisible” illnesses, including the myriad mental disorders like depression. I would argue that demands for FM to be considered a purely physical or mental condition are premature based on the evidence. The certainty of some sufferers is something I object to just as much as the certainty of some skeptics.

                I have to plan my life like a military campaign to make sure I don’t wear myself out to the point of uselessness.

                And reaching this conclusion, recognizing the adaptations you have to make in your life given your current state, is the kind of thing that I think anyone with a diagnosis of FM or CFS could benefit from. I’m quite certain that some could even recover from their condition based on this kind of help, but I would be surprised if all would.

                It’s not “malingering”; it’s a genuinely disabling condition. And if you say otherwise, I’m going to have to strongly disagree.

                No argument from me.

              2. DW says:

                “The first1thing you need to understand is that diseases like fibromyalgia and CFS aren’t a consistent state of feeling like garbage. They’re kind of like gout, where it gets better and worse. Sometimes you’ll feel like a human being, and sometimes you will feel like a gigantic pile of elephant dung.”

                That applies to most of us.

                “when you have a condition like this, some days you will have more energy than others.”

                Again, this isn’t something the rest of us are unfamiliar with.

                “I get really tired (pun not intended) of people saying that because they can’t see any physicalac symptoms of me being sick, I must not actually be sick.”

                Lots of people who have serious illnesses or conditions don’t look sick. I think that if people are saying to you, “You don’t LOOK sick,” it’s not likely just because you don’t look sick.

                “It’s not ‘malingering’ it’s a genuinely disabling condition.”

                Malingering isn’t the same thing as somatizing.

              3. Frederick says:

                My mother was diagnosed with fibromyalgia before 1999, numbness and pain, they did not really know what was goin on, but then, traces of MS appears in here scans, So the cat was out of the bag
                I kinda always saw Fibro. as a temporary syndrome in which they categorize patient before they can find was is really going on. So maybe some as MS, or other problem, but some might be totally psychological. This does not mean they fake, just that the problem is else where. The nocebo effect exist, ans stress, mental, psychological problems can cause pain. I’m not arguing that it is the case with you, of course, just that it is a really viable possibility that doctors can’t dismiss.

                But this is based on my personnal experience and biases.

          2. mouse says:

            DW “Believe me, that is NOT the way a psychosomatic sufferer reasons. You present a rational response, but these situations aren’t rational at all. If you suggest therapy or counseling to a psychosomatic sufferer, they are generally enraged.”

            I don’t know that is nessasarily the case. For one thing I would question labeling someone who is having a psychosomatic response as a type – as if the psychosomatic response is unique to a particular type of person, when it’s not. In fact I would think that it’s an an integral part of a our biological survival response within our environment. Have you ever blushed? That must make you a psychosomatic sufferer – with apparently an irrational belief that your blushing must not be the result of cognitive activity(?)

            I would suggest that you may be stereotyping individuals with psychosomatic symptoms based on a composite of the more difficult and demanding people with psychosomatic symptoms that you have known.

            I would also suggest that you may be evaluating negative reactions of people with psychosomatic symptoms in isolation when it may be more realistic to take into account how the diagnosis of psychosomatic illness was arrived at and presented as well as how the social circle of the patient reacts to the patient’s illness and diagnoses.

            A story. We’ve been having some issue with my daughter with eating and stomach aches lately. After waiting for a while to see if the issues resolved on their own. I took her to the doctor. After an appropriate evaluation and interview the doctor explained to my daughter that she thought the reason my daughter is having stomach aches is because her brain is worried about something (which I won’t go into) and a normal stomach’s response to the brain’s worry is to feel sick*. She went on with some information to alleviate my daughter’s worry and suggested positive steps my daughter can take when she feels this way. My daughter seemed quite relieved, NOT stubbornly insistent that her illness must be caused by a disease rather than anxious thoughts. I am not sure that the doctors reassurance will work (although I’m hopeful), but it was very helpful.

            So, perhaps outside an environment where friends or relative blame a patient for their illness by suggesting that they are just trying to get attention or are imagining their symptoms, individual patients with psychosomatic symptoms may be more inclined to accept help for that diagnoses.

            *The doctor’s version was better.

            1. Harriet Hall says:

              On a related note: When I had a patient with subjective complaints and no physical or test findings after a reasonably extensive workup, I would use the concept of a “functional” disorder: the body is normal, but something about the way it is “functioning” is causing distress. Physiologic processes may be more vigorous in some people, and some people are more aware of their body sensations than others. Since there is nothing “wrong” that can be excised or fixed, and since the body is not being harmed, the best course of action is to try to work out how to live with the symptoms and minimize their impact on the patient’s life. Doctors can help with that. Lifestyle changes and sometimes medication can be recommended, support can be offered, and psychological counseling can help too, since what happens in the body affects the mind, and vice versa. Patients generally accepted this explanation and were relieved to hear that they didn’t have anything life-threatening and didn’t need surgery or other unpleasant interventions or tests. They were willing to work with me without insisting on a wild goose chase of further testing or doctor-shopping. I always promised to keep an open mind and re-evaluate the situation if new symptoms developed or anything changed.

              1. Laura says:

                Dr. Hall,
                If I had consented to such an approach with my own medical problems, I would have been stuck with mental anguish, over-medicated and chronically physically ill.
                Instead, I persevered in figuring out what was going on, in making personal investigations and reading a lot of research, and I’ve come a long way.

              2. Harriet Hall says:

                I don’t know enough about your case to know whether I would have used such an approach with you. And as I said, any change in symptoms or failure to improve would always be a reason to re-assess the situation. Giving up on the diagnostic search too soon is a risk, but so is persisting too long in a wild goose chase for a answer that doesn’t exist. Too many tests can lead to iatrogenic harm. Clinical medicine is tough, and carries awesome responsibilities. I’m glad I’m retired.

              3. Laura says:

                When I had a patient with subjective complaints and no physical or test findings after a reasonably extensive workup … there is nothing “wrong” that can be excised or fixed, and … the body is not being harmed

                What makes you think nothing is physically wrong in that situation?
                Maybe your testing procedures aren’t able to diagnose every medical problem that a patient might have. Maybe your testing procedures miss common medical problems.

                Patients generally … were relieved to hear that they didn’t have anything life-threatening and didn’t need surgery or other unpleasant interventions or tests.

                What makes you think the patient couldn’t have anything life-threatening in that situation? Maybe they have a disease that is life-threatening over the course of years or decades.

              4. weing says:

                “Maybe your testing procedures aren’t able to diagnose every medical problem that a patient might have. Maybe your testing procedures miss common medical problems.”

                I seriously doubt they miss the common problems. I agree that not every medical problem is able to be diagnosed. That’s why we have projects like this.

              5. DW says:

                Laura – “What makes you think nothing is physically wrong”

                Probably what makes her think it is her expertise. She went to medical school, she has years of experience in practice, she most likely keeps up with the literature, and she has a good understanding of what particular symptoms may represent. By the time she has told you nothing is physically wrong, it is likely she has run all or most of the tests that would likely result in a diagnosis given your symptoms.

                If all the relevant tests are negative, she basically has to tell you that. That’s good practice. The real shame is when doctors go on testing such patients. If enough tests are run, no matter how unlikely the results are to be relevant, eventually SOME kind of abnormality or anomaly will be found. That’s when you get into the realm of iatrogenic problems, unnecessary surgeries, etc.

                “Maybe they have a disease that is life-threatening over the course of years or decades.”

                Yeah, maybe. But you know, the rest of us are going to die some day too, you aren’t the only one.

              6. Andrey Pavlov says:

                Too many tests can lead to iatrogenic harm. Clinical medicine is tough, and carries awesome responsibilities. I’m glad I’m retired.

                I am about to start my first overnight call in the hospital in 45 minutes. I’ve been catching myself making the mistake of answering pages as “Andrey” instead of “Dr. Pavlov.” The weight of every decision I make – because I get to put in orders and people do them – weighs on me heavily. And now I get to do it overnight doing admits in the ER.

                Maybe one day I’ll be glad to be retired. For right now, I am loving every minute of it. I’ve worked 68 hours this week and it feels like minutes.

              7. WilliamLawrenceUtridge says:

                Maybe your testing procedures aren’t able to diagnose every medical problem that a patient might have. Maybe your testing procedures miss common medical problems…What makes you think the patient couldn’t have anything life-threatening in that situation? Maybe they have a disease that is life-threatening over the course of years or decades.

                An equally-valid set of suppositions: maybe there was nothing wrong with these patients of Dr. Hall. Maybe their issues were psychogenic. Maybe they needed “permission” to reduce the stress in their lives and take on fewer responsibilities. Maybe they needed some sort of medical excuse to ask for help. Maybe they were abducted by aliens, maybe they were infected with a novel organism, maybe they were possessed by a very tiny and ineffectual demon.

                Maybe your experience is not representative of her patients’ experiences, and maybe your experience is the result of a quack lying to you for fun and profit.

                While this may be insulting to you, the ultimate point is there will be some cases where we simploy do not know why people feel sick and/or tired.

              8. Laura says:

                I seriously doubt they miss the common problems.

                Maybe there are common problems with subjective symptoms and no good diagnostic tests available.
                How would Dr. Hall know if she missed such a problem?

              9. Harriet Hall says:

                I would not know if I missed such a problem. How would anyone else know if I had missed it?

              10. Laura says:

                Giving up on the diagnostic search too soon is a risk, but so is persisting too long in a wild goose chase for a answer that doesn’t exist. Too many tests can lead to iatrogenic harm.

                I wasn’t thinking so much of sending someone off for exotic diagnostic tests. There may well not be a lab test out there for what ails them.
                A fairly common cause for someone to feel subjectively bad – “mental fog”, sick in a nonspecific way – is some kind of immune reaction.
                And if it’s an immune reaction to something in the environment – some kind of allergy – then the doctor and patient can work together to tease out the problem(s), through an empirical process.
                I had this happen to me. For many years, I had allergies on skin tests. I would test positive to most of the allergist’s test panels. I got allergy shots for years but I couldn’t tolerate the shots well enough to increase the dosage, and they eventually “flunked” me out of the shots.
                I don’t have classic, obvious allergy symptoms. I don’t sneeze much or get teary-eyed or get obviously congested. I get a fuzzy head from allergies, mental fog, can’t think well.
                Late 2007, I came down sick with what seemed at first like a winter cold.
                But it never went away. It felt like a sinus infection, so I got months of antibiotics. Eventually I got a sinus CT scan, and I was told I didn’t have an infection, it was my allergies bothering me.
                But the allergist said he couldn’t tell me which specific allergen it was.
                I didn’t find the allergen – for years.
                Over those years, I gradually became sicker. My specific sinus symptoms went away. I was sick in a nonspecific way. At the same time, my allergy testing became negative! I was told my allergies were disappearing.
                I went to my family doctor and got all the tests he could think of. Nothing appeared except that I had Hashimoto’s. My thyroid levels were normalized, but I was still sick.
                I saw allergists, but they advised against looking for an allergy cause, because my allergy testing was negative.
                Slowly, after MANY personal experiments, I figured it out. I eliminated some mold that had been getting into my food, and I felt somewhat better after that. But I was still very sick.
                Then after I’d eliminated the mold, I went off to stay in a no-pets hotel. After about 5-6 days, my mind was clear – for the first time in about 18 months.
                Then I went to the SPCA and cuddled dogs for a couple hours. I got very sick, I was walking very slowly after that and I spent the next few days in bed.
                So, despite negative allergy tests, I was sick from a dog allergy. I tried the same experiment again with a dog exposure in a different situation, and again got sick.
                The diagnosis is very VERY important. Finally, I had a diagnosis. Eventually I moved out of my house to get well, put my dog in a boarding kennel, saw a good allergist in NYC who got me on anti-IgE medication and eventually started allergy shots. Now, perhaps because of the anti-IgE medication, I do tolerate the shots and they have already helped me, and hopefully will help a lot more.
                BUT, it took me a long, LONG time to figure it out on my own. The doctors did almost nothing for me, before I had that all-important diagnosis. They ran their tests, and their tests came up negative. After that, they had nothing to offer me.
                This is not how it should be. Doctors could help people with these obscure illnesses, even when the standard tests are negative. They could help them plan personal experiments, give them guidance on what is a plausible cause and what isn’t. When someone is really sick, they may not have the initiative to plan experiments. They may not have a take-charge attitude. My mind wasn’t working well, and that also made it very hard to take the initiative. I had a hard time even getting the energy to go out of my house.
                When reasonably analytical MD’s don’t help their patients figure out what’s wrong, patients turn to less analytical and less reliable methods. They might decide they have “MCS”, or that the new carpet is to blame, or who knows what.

              11. Harriet Hall says:

                I’m afraid you will take this the wrong way, but your self-experimentation does not convince me that you have found the true cause of your symptoms. You don’t explain what kind of mold had been “getting into your food” and how you eliminated it. An N=1 double blind test that exposed you to mold and dogs without your knowledge would have been more convincing. And even N=1 double blind tests can give misleading results.

              12. Laura says:

                When I had a patient with subjective complaints and no physical or test findings after a reasonably extensive workup … Patients generally … were relieved to hear that they didn’t have anything life-threatening

                People can have asymptomatic celiac disease, or celiac disease with only subjective symptoms such as depression or fatigue.
                Celiac disease raises the risk of colon cancer, lymphoma, etc.
                So missing that diagnosis could kill someone. Not fast, but they might die of cancer after years or decades of eating gluten.
                And the doctor who missed the CD diagnosis might never know that the person actually had celiac disease, and it ended up killing them.
                Unless doctors now routinely test people with nonspecific symptoms for CD, they would still miss that diagnosis.
                People with CD often went undiagnosed for decades in the past, although it’s not quite as bad now.
                Also, people can feel bad in a nonspecific way because they have cancer. I read in a newsletter that a hospital put out, an account by a patient who felt nonspecifically bad. Doctors couldn’t find out what was wrong. The patient said they knew that something was wrong, they felt too bad to be basically healthy, so they couldn’t accept doctors’ assertions that there was no real medical problem. Eventually, they were diagnosed with cancer.
                And time spent with undiagnosed cancer can be deadly.

              13. Harriet Hall says:

                “People can have asymptomatic celiac disease, or celiac disease with only subjective symptoms such as depression or fatigue.”

                By definition, it is not asymptomatic if patients have symptoms such as depression or fatigue.
                How often is celiac disease manifested only by depression or fatigue with no other symptoms? I couldn’t find any numbers. Can you? I wonder, if they had no other symptoms, if they might have been in a presymptomatic stage of celiac disease and the depression and fatigue might just have been a coincidence, and those symptoms might have been due to something entirely different?
                If everyone with nonspecific symptoms were routinely tested for celiac disease, I suspect false positive tests would outnumber true positives, and some people would be condemned to a lifetime of a restrictive diet they didn’t really need.

              14. DW says:

                Laura – “The doctors did almost nothing for me, before I had that all-important diagnosis. They ran their tests, and their tests came up negative.”

                I’m glad you got better. But I find the statement above quite striking. It sounds to me like the doctors did quite a bit for you. Yet you consider they did nothing, or almost nothing. That is not the same thing as finding a treatment that made you feel better. Doctors do not have all the answers, and when they run extensive tests, they are not “doing nothing” – they are drawing on their knowledge and experience even to decide what to test for. The worst we could say is that, these doctors helped you immensely by ruling out numerous possible causes of your ailment.

                I feel like some of this is based on magical thinking. Many people seem to believe doctors have magical answers, and they should only wave their magic wand and you’d be well. Some people really act like doctors “really know” what is wrong and are just being mean if they won’t tell you. When this proves unrealistic, it’s reported that “the doctors did nothing.” Hm. By your own report a number of doctors did quite a number of things for you.

                They can’t realistically “help you design experiments.” Your experiment wasn’t a scientific one. If you feel better now then that’s what counts – but there’s little reason, from a scientific standpoint, to conclude it was dog(s) that caused your problem. Any number of potential other causes exist. You drew a conclusion using yourself as a sample of 1, and that just isn’t how doctors diagnose. As an overall diagnostic method, it does not work. It isn’t a means of finding answers that will likely help in most cases. It’s scattershot. Maybe it worked in your case for you, by chance. But more likely, either 1) you got better spontaneously from whatever caused your ailment – that is what happens with most ailments that don’t actually kill us – they eventually go away; or 2) it wasn’t dogs, it was something else, which of course includes the possibility it was (at least partially) psychosomatic.

                And realistically, doctors cannot work in the way you suggest even if it were possible to find causes of very specific symptoms in this manner. We could debate why the health care system is in the mess it is in. But the reality is no doctor can spend hours, days, weeks or months helping one patient track down something extremely obscure, pursuing less and less likely possibilities, using hit-or-miss methods like “elimination diets” or “allergy diets,” where you basically decide to test yourself against, well, absolutely everything in the world and narrow it down one by one.

                Besides: if you were able to solve it yourself, what did you need all those doctors for? It would be interesting to hear exactly what you think they SHOULD have done that they did not do, that would actually require medical expertise. Given that you think they actually did nothing and that you were actually able to totally self-diagnose without (I presume) a medical degree. What good are doctors?

              15. DW says:

                Laura again – “The patient said they knew that something was wrong, they felt too bad to be basically healthy, so they couldn’t accept doctors’ assertions that there was no real medical problem. Eventually, they were diagnosed with cancer.”

                Hm, eventually … but the person may not have had cancer originally.

                This definitely happens. Let us keep in mind that even hypochondriacs get sick. Realize that in fact, if you search for a diagnosis for months, years, or even decades, you will most likely eventually get one. It simply stands to reason.

              16. DW says:

                Laura again – “Maybe there are common problems with subjective symptoms and no good diagnostic tests available.
                How would Dr. Hall know if she missed such a problem?”

                Sorry to bombard you, Laura. But the logical next question is how would ANYONE know, if there are no good diagnostic tests. What exactly is it that you would like Dr. Hall to do in this circumstance?

                I hope you’re not going to say that she should guide in testing every single breed of dog on the planet, eliminating them one by one to see which one(s) you might be allergic to. That’s if it’s dogs. What if it’s birds, or cats or horses. It would take several lifetimes to run the sort of tests you propose, and you probably aren’t her only patient.

              17. KayMarie says:

                “Maybe there are common problems with subjective symptoms and no good diagnostic tests available.
                How would Dr. Hall know if she missed such a problem?”

                Generally when this happens the doctor gives the common diagnosis for the symptoms presented. How many “rule out every other condition on the planet even the ones that in no way match anything the patient is complaining of” tests depends on a lot of things, very often doing more tests than the diagnostic guidelines require based on age and severity of the symptoms. Mostly I think because most doctors want to find something, or help convince the patient they are not dying of some terrible illness because you know most people do actually go into medicine to help people.

                I have a fairly rare condition (1 in 100,000) that took decades to figure out. NONE of the exotic tests of the naturopath or other woo would have found it. Because I didn’t get the puts you in the hospital consequences, just the makes you wish for death consequences we didn’t find it earlier. When we determined what it was (from a very specific side effect I didn’t realize I had for a long time because I didn’t generally exercise long enough to have the specific side effect) we didn’t even do the confirmatory test. The test was painful and there was no reason not to try the limited treatments.

                FWIW, most doctors do look for common diseases or patterns of symptoms (the horses) even when the patient is sure they are some rare zebra never seen before. Mostly because for the common things doctors do see one of those patients every month, or every week, or sometimes several times a day. To think they would never notice something effecting 5-20% of the population (for the subjective but common condition I am thinking of that has no test to prove it -irritable bowel syndrome).

                Now a fair number of doctors will hedge that diagnosis as they know they cannot prove it to anyone, ever, and even if 100% certain they won’t be certain with the patient. Compared to a woo-healer who is 110% they know what is wrong with you even if that condition does not exist.

                That being said some conditions are harder to fine (like celiac that can mimic some other disorders) and the true number of patients to expect with it estimates are wrong. However, science, and science-based medicine is a self-correcting system. It doesn’t move fast becasue the amount of data you need to change your mind and protocols is pretty large and needs to be very high quality. But it does change. Although disseminating that change is an issue and I’m currently involved in translational research which is in part trying to find out how to actually get things from the lab once the data indicates a change is needed into the clinic as quickly and accurately as possible.

              18. DW says:

                Dr. Hall – “Physiologic processes may be more vigorous in some people, and some people are more aware of their body sensations than others.”

                As my cousin (a doctor) put it, some people “hear from their digestive systems” only a few times a day – when they’re hungry or need to go to the bathroom. Otherwise, it’s not something they think about. Other people apparently “hear from” their stomach and their esophagus and their intestines all day long, minutely aware of every bubble and gurgle and spasm, and these sensations become important parts of their daily experience. While the rest of us are doing our work or interacting with our families or reading a book, these people are “relating” to internal processes inside their own bodies. This is not their fault, it may be a matter of individual physiology. But if one is continually consciously aware of bodily sensations that other people are generally ignoring, it is probably easier to conclude that something is malfunctioning. Because in a sense it is – it is just unlikely that it represents a terrible disease or some other catastrophe that it can become in one’s mind, but just needs learning to manage or ignore or distract oneself from. I’ve been there myself (just not in the chronic fashion).

                I am certainly not saying this is the case for anyone with an undiagnosed illness or chemical sensitivities, but it’s a possibility for some.

            2. DW says:

              Hi mouse, I agree somatizing is something almost everyone does at some time or other, some people more regularly than others. But in some people it’s sort of baked in, part of a personality structure, not just an occasional thing. Multiple chemical sensitivity is a very different animal from a teenager with a stomach ache from anxiety.

              1. mouse says:

                DW – Well like I said in a comment below. I recollect the author of a book on Lupus and other connective tissue disease that was diagnosed with MCS before it was discovered that she had SLE. So I’m guessing the “animal” of MCS may actually be alot of different animals being labeled as Big Foot by some over enthusiastic – under analytical doctors, naturopaths, etc.

                You seem to have a very clear vision of what people with a MCS diagnoses are like. I’m not sure where or how you got that impression, but due to the high risk of fundamental attribution error in these kinds of situations, I seldom believe assertions of common personality traits in groups of people with a similar diagnoses without compelling evidence to back it up.

              2. DW says:

                Ah, I wrote a comment and lost it. I’ll try again but probably more briefly. I am not saying all hypochondriacs are alike – they are as varied in personality as any two people. But there are certain personality traits that are virtually pathognomonic for somatization disorders. These folks are a very small percentage of the population, but they spend inordinate amounts of time in doctors’ offices, and internists and family physicians learn to see them coming a mile away.

              3. mouse says:

                @DW – Well of course some people with somatization disorder have incredibly difficult personalities. I could point out that many people without Somatization disorder also have incredibly difficult personalities. They are probably just tormenting other people (such as waitresses) rather than doctors.

                Then again, sometimes it’s the disorder that is making the person unpleasant and once it has been treated the person is much more fun to be around. People with untreated depression and bipolar are reeeealllly difficult to spend time with too. So it can be difficult to separate the more persistent “personality” from the more easily treatable disorder based on behavior alone.

                I would guess that you are talking about a subset of people with either hypochondria or somatization disorder that have comorbid axis II disorders (personality disorders) which can be more difficult to treat or talking about people with delusional disorders rather than hypochondria or somatization disorder

                DW – your terminology is a bit confusing. It seems you are using terms interchangeably that are different diagnoses. The link I posted below is a good overview of the different diagnoses, not to long, with a description of hypochondria and other disorders it may be confused with along with comorbidities such as depression, etc.

                here it is again. http://www.currentpsychiatry.com/the-publication/past-issue-single-view/dont-be-fooled-by-hypochondria/26fbb3403873d16a34776b047103380c.html

      2. Frederick says:

        There’s probably also people who put their “symptoms” fault to evil EMF or chemicals for ideological purposes. For example, people have headaches all the time, it is normal, So last week you have a headaches, no problem. But Monday the electricians came and install a smart meters. You are gullible to scare monger whining, so on Wednesday you have a headache, that you think is worst than ever, So what do you do, it’s the smart meter fault! OF COURSE. Same goes with chemicals.

        For example there the case of saint-cloud in France, Orange install 3 Cell phone antenna near inhabited area. the following week, people report to have headaches, nose bleed, muscle pain, Alouette! The town ask for removing the antenna etc, but upon further investigations, it turns out that not only the EMF modulation device, and all electronics related to it, were not install on those antenna, the electric sources were not even plugged in! So people probably had all normal ailment anybody can have all the time, But instead of ignoring them, they reported those with the “cause by EMF” conclusion already printed in their mind without any evidence.

  2. KayMarie says:

    Why is it that all of the various assorted fad/fake diagnosis of the moment all seem to have similar symptoms (headache, fatigue, brain fog, etc) and similar fake treatment options?

    What kills me is how many people will get a real diagnosis from an MD but because they perceive it as a “junk diagnosis” (especially if a chronic annoying condition that doesn’t have a lot of treatment options or specialized tests and the doctor can say what you have based on your specific symptoms) and then go to the local healer and get the fad diagnosis du jour and perceive that as somehow not at all junk (even when the local healer tells just about every single person they see that they have the same exact diagnosis no matter what symptoms they have).

    1. WilliamLawrenceUtridge says:

      There’s a whole branch and area of study of this. One school of thought is that our society prioritizes and destigmatizes physical ailments in ways that mental ailments are not. In the past, ways of signalling distress were different so the expression of social distress varied in form. Think Charcot’s hysterics, with contemporary manifestations of multiple personality disorder/dissociative identity disorder (a fascinating body of research on the topic), chronic fatigue syndrome, fibromyalgia, MCS and for men, back pain.

      Very neat ideas.

    2. DW says:

      These people are the worried well. They don’t understand that we all have brain fog, fatigue, and headaches sometimes. CAM artists prey on these people, mainly because it is so easy to separate them from their money.

  3. Ed Whitney says:

    Anyone besides me ever have a chain-smoking patient with MCS, where 1 part per billion of a fragrance will trigger an attack of symptoms but cigarettes do nothing at all?

    1. Harriet Hall says:

      No, but there was a patient featured in a TV report who was sensitive to all kinds of things but was shown with her dogs and riding her horse as it kicked up clouds of dust in the arena. But then dogs and horses are natural; her allergies were limited to artificial man made evil stuff.

      1. KayMarie says:

        I wish I just reacted to man-made evil stuff. Much easier to avoid than the plants trying to reproduce in my nose.

      2. Ed Whitney says:

        The dogs and horses are great examples of a phenomenon that can be put to use.
        People will resist being outright told that their symptoms are psychogenic, but a little bit of indirection can sometimes take things in a new course.
        For example, asking them if they experience symptoms out in the forest, which is full of fragrances, generally leads to a “no” response, because these fragrances are “natural.” This can lead to an exchange something like the following:

        “Hmmm…isn’t it interesting that it is things like paints and perfumes that you react to? Paints cover things up and change their appearance, and perfumes also cover things up in a different way…”
        “Hmmm, I guess that is interesting.”
        “It is as if these things have something in common…they are a sort of deception, trying to make the senses not perceive what lies underneath.”
        “Hmmm…that could be.”
        “You know, I have talked to many people who grew up in an atmosphere of deception. They would see underneath the things their parents were telling them, and were told that they were wrong. They would be told, ‘No, you did not see daddy passed out drunk on the couch last night; he was only taking a nap.’ Or they would be told, ‘No, you didn’t hear mommy say that she could hardly wait to go out with that nice man from the office; she was just talking about business with him.’ Something was going on, something was being covered up, and they were told that they did not see what they saw or hear what they heard.”

        It was surprising how often this would lead to an outpouring of a family history of adults behaving one way, representing it as something else, and sanctioning children for detecting the incongruity between appearance and reality. A psychological narrative would emerge, which came out of the patient’s own experiences and was not imposed upon them.
        Then the message to them was that their symptoms are psychogenic, not in the sense of something wrong with them, but something right with them that had gotten turned into a distorted version of what it was rightly supposed to be. A perfectly good resource had been put to a screwy use, and needed to be turned back into the right direction, because in a world awash in deception, we need people who can see clearly and hear clearly and remain healthy in all kinds of environments. The patients could do their own reframing if given room to do so.

        1. mouse says:

          ““Hmmm…isn’t it interesting that it is things like paints and perfumes that you react to? Paints cover things up and change their appearance, and perfumes also cover things up in a different way…”
          “Hmmm, I guess that is interesting.”
          “It is as if these things have something in common…they are a sort of deception, trying to make the senses not perceive what lies underneath.”
          “Hmmm…that could be.”
          “You know, I have talked to many people who grew up in an atmosphere of deception. They would see underneath the things their parents were telling them, and were told that they were wrong. They would be told, ‘No, you did not see daddy passed out drunk on the couch last night; he was only taking a nap.’ “etc

          Hmmmm, If I react to polyurethane clear coat does that mean that Mommy was transparent and over-protective?

          IMO – That’s a bit too much like the leading narrative approach that caused problems with false memories of childhood abuse that was discredited years ago.

          I’d like to see some evidence that backs up a theory that non-specific symptoms in response to paint and cosmetics are causally linked to being deceived or being required to cover for a family members as a child.

          1. n brownlee says:

            Absolutely. Well said, Mouse.

      3. simba says:

        That can legitimately happen with some conditions, of course. Plenty of people with hayfever or asthma, for example, could be fine with horses and dogs but very sick if someone brings the wrong type of flower into the house.

        But then their allergies don’t tend to be divided into ‘natural’ and ‘man-made’. They can also suffer from the natural fallacy: ‘oh but it’s just flowers!’, how can someone be made sick by a little flower with a pretty smell?

    2. MTDoc says:

      Yes. “But doctor, smoking helps relieve the symptoms”. Not an easy patient to treat.

      1. James says:

        Just to play the devil’s advocate.
        Smoking can help for some conditions
        http://gut.bmj.com/content/39/1/60

      2. ebohlman says:

        If the symptoms are triggered by odors, could it be that smoking is suppressing their sense of smell?

        1. WilliamLawrenceUtridge says:

          If it’s an allergic reaction, being able to smell it makes no difference. If it’s a placebo/nocebo, then they would be less likely to complain, not more.

      3. n brownlee says:

        Smoke temporarily paralyzes the bronchial cilia- at least, that’s what a pulmonologist told me, twenty years ago. So it stops bronchospasm.

      4. Captian_a says:

        I once had a patient tell he that marijuana relieved his constipation. If he didn’t smoke weed for several days, he became constipated and became progressively more brain fogged. His conclusion was that he was allergic to his feces and his solution was smoking marijuana.

        His family Dr., a very astute fellow, told him that while his reasoning was sound, he had never heard of such a condition. He wanted to write it up and publish this novel condition with the name Allergic Sh*# Syndrome, acronym A.S.S.

        Funniest case I’ve ever seen. Being an allergist can be entertaining.

        1. Andrey Pavlov says:

          @Captain_a:

          That actually is possible (though obviously not for the reasons your patient thinks). I’ve done some reading on the pharmacology and pharmacokinetics and there is some decent data that shows that THC has a relaxing effect on colonic smooth muscle.

          1. Windriven says:

            Better than a hazelnut latte enema, Andrey?

            1. Andrey Pavlov says:

              LOL. I don’t know if there has been any comparative effectiveness research between the two modalities. But I can tell you which one I’d consider doing and which I’d certainly pass on.

        2. Windriven says:

          Great minds, Captain_a … I was already having a blast with the possibilities before I was two sentences into your comment :-)

    3. muletonic says:

      I’ve seen that too — from people that claim to be allergic to nightshades, of course.

  4. Lytrigian says:

    I’ve just been thinking about these issues. My local coffeehouse just added a bunch of gluten-free items to its food case. Fully a third of what they now offer to eat is gluten-free — and priced accordingly. There cannot, of course, be so many people in the population sensitive to gluten. Western civilization would have collapsed a long time ago if its staple grain damaged so many of its people’s health. It’s not quite as bad as claimed MSG sensitivity, since we know gluten does cause genuine problems for a small number of people, but I’m convinced gluten sensitivity is largely illusory.

    As an early GenXer, it’s tempting for me to blame the Boomers — just because it’s tempting to blame Boomers for just about anything, including solar flares and tsunamis. But I wonder if much of this isn’t simply due to a great many people aging, and no longer enjoying the robust health of their youth, and wanting to blame some condition other than the obvious?

    1. ebohlman says:

      Most of the people avoiding gluten are doing so because they think it will help them lose weight, not because they’re actually convinced they have gluten sensitivities. And it might actually be helping them lose weight because, as you said, the gluten-free stuff is priced accordingly and they can’t afford to eat as much of it as they can with ordinary goods. Of course they could get the same effect by using a piggy bank to save up for non-food luxuries, but that wouldn’t give them any hipster cred.

      1. Lytrigian says:

        What irks more than a little bit is that I have people close to me, both in they physical and familial senses, who really do need gluten-free food. Both my uncle and my next-door neighbor are coping with Celiac. Genuinely having to avoid all gluten because otherwise your gut becomes seriously inflamed is much more burdensome than this fad gluten avoidance.

        1. KayMarie says:

          I’ve had neighbors and friends who have Celiac and I’ve seen what they have to go through to avoid people sneaking gluten into their food (usually by accident or not understanding that some seasonings or other things have wheat in them to keep it from clumping, etc.

          I also know some of the early adopters of “gluten allergy” or whatever they call it. Oh I’ll make a big fuss about it until I want a cookie as one cookie won’t hurt. Really, my neighbor was out of school for days because her Mom didn’t think they’d put wheat in Rice Krispies.

          I’m just wondering what will be the next fad they can use to try to promote food.

        2. lagaya1 says:

          Shouldn’t you be happy that they have so many more choices, now, due to this fad? Why angry about it?

          1. WilliamLawrenceUtridge says:

            Because “fake” gluten-free people result in products that have small but meaningful amounts of gluten in it. A “fake” gluten-free person has no consequence from eating a rice grain-sized quantity of gluten. Someone with actual celiac disease ends up shitting out their bloody intestinal linings for a week. Because “fake” gluten-free person shows no side effects and occasionally eats a piece of bread, the concept of “gluten free” is belittled, diluted and played down, which can be horrible for people with actual celiac disease.

            Not to mention – it’s essentially a falsehood, a lie, a complete misunderstanding and misrepresentation of the science and medicine of gluten, celiac disease and human nutrition. That offends me as a critical consumer and scientific literate, and it drives me nuts when people say “they can’t eat gluten” then I see them eating hummus on a pita.

            1. Lytrigian says:

              Nailed it.

              Exhibit B is my mother-in-law, who’s “allergic” to milk. Not lactose-intolerant, she claims to have an actual allergy, the primary symptom being something like diarrhea. So she’ll have dairy “once a while”, when it’s something that looks REALLY good.

              Me, I think she’s just got the runs nowadays and fixes the blame on the occasional indulgence rather than deal with it.

              1. KayMarie says:

                I know someone with a real dairy allergy. They were obsessed with making sure they didn’t get any dairy at all. So you can have real problems with some of the “fad problem” foods.

                Unfortunately a lot of “fake intolerances” or people who just have a gut that is a bit more sensitive to certain foods than they would like or they believe about other people and suffer from minor issues when they deliberately eat something “bad” do not seem to understand there are those who get severe consequences from small mistakes.

                Sometimes they are even worse about pushing someone to have just one bite of something than people with “cast iron stomachs” because well they can have a cookie or a scoop of ice cream once in awhile and it isn’t that bad.

  5. brewandferment says:

    I sometimes wonder if some of the perfume sensitivities are a way of someone who might have been somewhat powerless and/or passive-aggressive to assert control over everyone around them in a socially acceptable way. That is, if you don’t want to stop wearing your favorite perfume, you are placed in the social villain role because “why would you want to bring extreme pain on someone” when in reality the MCS claimant just doesn’t want to come out and say “I don’t like people wearing scent around me and I am to be catered to in every possible way.” In other words, it’s not in their heads, it’s a character defect to insist that their wants are superior to everyone else’s (even if they are not–and I think many are not–consciously thinking that way.)

    I mean, how could scent molecules even have such effects unless you nearly stick your nose in the raw scent?? The nasal scent receptors send signals to the brain which then interprets what the scent means–the actual quantities of scent molecules that get absorbed into the body are pretty miniscule are they not?

    1. KayMarie says:

      There are possibly some odd things going on where something like an odor with anxiety can create a weird kind of feedback where something normally neutral gets linked to something that makes you anxious so it becomes a bad smell that then makes you more anxious making it more negative.

      http://www.sciencedaily.com/releases/2013/09/130924174150.htm

      Not sure how solid or how well the data will replicate, but could be part of what is going on. Especially since a lot of the phenomenon seems to require you know the bad thing is there. Makes some sense back in the day. Smell something, lion nearly eats you. Smell it again, start looking anxiously around for the lion. I do think sometimes some of our neurotic issues in modern life is the parts of the brain that got freaked out and thus made you run to safety before you even saw the lion is what kept us alive. Now there aren’t so many real threats it’s like a dog bred to work and run all day being left alone in a house with a couch that is just begging to be shredded.

      1. Alia says:

        I have a mild case of that. When I was a kid, my parents had some land, grew some fruit and made fruit syrups, jams, etc (these were the communist times, nothing in the shops, you had to make-do). Once their raspberry syrup got burnt. It smelled awful in the whole flat and it also tasted terrible. Now, 30 years later, I still can’t stand raspberries in any form, even the fresh ones, even their scent. Raspberry=burnt smell and taste.
        Which made it really awkward when my mother-in-law gave me a nice set of cosmetics for Christmas – raspberry and chocolate scented.

    2. Ed Whitney says:

      Back in Santa Cruz, CA in about 1993 the city council voted to put up signs at city hall asking people not to wear fragrances. One council member voted against the measure. The following day I entered my office and a woman in the waiting room (not even one of my patients) collared me and told me that I MUST go down and get that council member to change his vote, since he was hurting people by voting “no” on the resolution. I pointed out that it had been nearly unanimously passed, but that was not good enough; this lone council member was causing great damage and had to be stopped.

      It was as if a single doubting voice anywhere was a significant threat to her health and safety, especially since it was the voice of someone in a position of authority.

    3. antifragrancelady says:

      I’m totally in support of science-based medicine. But I also completely support folks insisting on no fragrances at work, school, doctor’s offices and the like, even if I have to align myself with some pseudoscience supporters to achieve fragrance-free public spaces. Those who insist on wearing their stankity perfumes around their co-workers, for example, are the selfish controlling ones. You are free to wear your favorite perfume at home and in your off hours. Don’t stink up the office with it. LOL

      1. Windriven says:

        I’m with you. I wouldn’t even mind if people would use a dab subtly. But NOOOOooooooo, they have to bathe in it. And the teenage Lotharios are worse than the blue-haired matrons. I mean really folks, what is it you’re trying to cover up?

        1. WilliamLawrenceUtridge says:

          Most people wearing the perfume or body spray want to smell it, probably becuase they like the smell. The problem is, you become desensitized to it. So to keep smelling it, they have to apply more. And more. And more. Until it’s an abominable reek that could cover up a decaying corpse of a first dynasty Chinese emperor.*

          It’s an odd thing – you wear it because you like the smell, but you become immune to it and everybody around you suffers. That’s why I stick to my natural musk, which everyone is too polite to tell me is overwhelming. The number of wome who throw themselves at me on a daily basis because of it is really quite unreasonable.

          *This oddly-specific reference brought to you by a recently-completed book on the terracotta warriors.

          1. Windriven says:

            “probably becuase they like the smell.”

            I thought it was to mask relaxed standards of personal hygiene. I feel the same way when I see someone with makeup beyond the strictly minimalist.

            1. WilliamLawrenceUtridge says:

              Keep your judgments to yourself, thanks. Some of us like the clown-whore look.

              1. Windriven says:

                And there are the Tammy Fayes who trowel it on. Tres chic.

        2. SoSoCal says:

          My kids came of age when Axe commercials were exhorting boys to spray tons of this stuff all over their bodies because oooh would the girls come running. Have you ever driven a carload of ninth grade boys to a school dance? Oh. My. I had all the windows down, and had my head hanging out of mine like a dog.
          This was one of the times when I passed on to all of them an adage I had heard in my 20′s. I told them this was a Universal Truth and they needed to take it to heart.

          “A scent should be discovered, not announced.”

          A few years later I passed this adage on to a group of fine young ladies I was transporting to a party. They thought about it for a few seconds, then squealed “Oh Mrs. K! That’s so true!!” and traded stories about boys so covered in Axe that no one could slow dance with them. They thought a little more, and then all I heard was a “hmm” as they realized they all were awash in perfume.

          Just a memory that brings a smile to my face…

          1. Chris says:

            “Have you ever driven a carload of ninth grade boys to a school dance?”

            I have entered the band bus after several high school boys changed out of their wool band uniforms after marching through a hilly warm town in Eastern Washington. That smell will really knock you back.

            Unfortunately that is the smell they then attempt to cover with Axe. Ugh!

      2. Frederick says:

        My god, this bring some memories 13-14 years ago I was working at this factory, and a women will pass, everyday near that our worked space, me and my colleague, David, we called her “La comète Parfumée” because she was trailing perfume, like a comet trail dust. We were able to smell her from 4-5 meters and for 5 minute AFTER she passed. I mean COME ONE, perfume are made to be smell by the person. that is going to be very close to you, not your entire neighbourhood. I don’t care about perfume when it is discreet, but some people ( man and women) don’t know the limit.

    4. Egstra says:

      “I mean, how could scent molecules even have such effects unless you nearly stick your nose in the raw scent?? ”

      I have pretty intense reactions to some perfumes, even to some that I like the smell of. My sinuses start hurting, my nose clogs up, and I get headaches. I also have that response to cat dander, and some flowering plants. Other perfumes and flowers don’t bother me at all.

      I have no idea what it’s all about, but I wish it would go away.

      1. Andrey Pavlov says:

        When I was a kid I couldn’t walk through the perfume section of department stores. The scents were just too intense. It would give me a headache in seconds. Now I don’t have that issue (it seems my sense of smell has diminished over the years).

        But some people’s noses are just more sensitive than others. And react to different molecules. My fiance, for example, is surely part bloodhound. She once came home and immediately claimed that there was a rotten smell. I couldn’t detect a thing. She sniffed around and decided it was in the (still closed) fridge. She opened the door and said it was definitely there. Started sniffing around and found this chicken we had in the fridge. One of those that is vacuum sealed with really thick sturdy plastic wrapped hermetically around it. She thought it was coming from that. I picked it up and put my nose right up to it. Nothing. The next day I was planning on cooking that chicken. When I cut open the plastic, the thing was rotten.

        How in the sweet FSM my fiance was able to smell a chicken that had only just turned, from two rooms over, behind a closed refrigerator door, still hermetically sealed in thick plastic is beyond me.

        1. Windriven says:

          In the immortal words of Bette Midler, I’d be careful about coming home “with the scent of another woman upon your person,”. ;-)

          1. WilliamLawrenceUtridge says:

            Yes, truly the finest advice a philanderer will ever receive is “always shower at the brothel”.

        2. Chris says:

          Yikes! And I thought I had a sensitive sense of smell. Sometimes I do sniff around the house for that errant smell that no one else can detect. Though over the years it has become dulled due to having kids with two gastro exits, a pair of cats who decided to use traditional feline marking methods (beige carpet on stair landing has a permanent yellow stain) and due to age.

          My sense of smell seemed to be linked to monthly hormonal cycles, and would become more sensitive prior to a period. One time I smelled a horrible mold smell from an old chair that no one ever detected and had to rip the upholstery off and get that into the garbage. This has settled down since hitting menopause, but it is still sensitive. I can tell when there is the stench of cilantro from over a meter away, and I knew exactly what soap a woman sitting in front of me used.

          A small word of advice, Andrey, when you bring home flowers to that lovely woman try to avoid certain lilies (like Casablanca). They have a very strong smell and can permeate the house. It is a nice smell, but so strong it can cause headaches. Also, if you get paperwhites that have been forced to bloom at Christmas, make sure she actually likes the smell. I had them in my house once, and never again because the odor is ghastly.

        3. Chris says:

          “The scents were just too intense. It would give me a headache in seconds.”

          I should add that when I was in college in the late 1970s I could never enter stores that were burning incense (some that was popular then). I have waited outside of a candle store while my family shopped because of the smell, and when my daughter needed me to pay for things at a certain cosmetic store I would wait outside until I was needed, rush in and pay for her while almost holding my breath. I was so glad when she got her own ATM card.

      2. simba says:

        I have an average-to-bad sense of smell, and asthma. Not a good combination.

        Fortunately there are very few perfumes and things that set it off, but sometimes I will sit talking to someone who has, say, the wrong kind of hairspray for a few hours, get home, and wonder why I’m struggling to breathe and my finger nails have turned blue. Some of the things that set it off don’t even have a smell- so I don’t know how that works, that I don’t detect it.

        So while logically I realise it’s not fair to make other people alter their behaviour to suit me, if my neighbour planted lilies or a friend kept putting on something I was allergic to before they came to visit me, I’d be fuming.

        There’s always that question with allergies, of how much accommodation can or should be done to cater to people with those allergies. It’s easier with some food allergies, don’t feed it to them and label food.

        Back to Brewandferment’s point about ‘sensitivities’ as a means of control, I can see someone with a fear of dogs preferring to say they’re allergic, so the dog owner doesn’t just go “He’s friendly, it’s fine” and let the dog loose around them. Allergies can be a way to mask or legitimize an aversion and be more sure of getting a response to it.

        1. n brownlee says:

          “Some of the things that set it off don’t even have a smell- so I don’t know how that works, that I don’t detect it. ”

          You probably know that there are asthma triggers other than inhalants- many! There are food triggers, and exercise- highly individual. And once you’re slightly wheezy, you’re likely to react to irritants that wouldn’t normally bother you.

          1. simba says:

            I was actually thinking of pollen- there are some plants which set me off which don’t particularly have a smell. Hayfever sufferers experience the same.

            But yes, food triggers and exercise are also possible.

    5. mouse says:

      “Various diagnoses were given, but a subsequent psychiatric assessment conferred a diagnosis of “narcissistic, borderline personality disorder with extreme anxiety” to explain the totality of his presentation. As analgesic, asthma, and allergy medications provided minimal sustained benefit, psychotropic medication was employed but to no avail.”

      Really? Narcissistic AND boderline personality AND extreme anxiety. I’m fine with questioning MCS but is anyone questioning this diagnoses? Anxiety that is not aleviated will lead to all sorts of dysfunctional social activities as the sufferer attempts to control the anxiety by controlling the events and people around them. How could the therapist arrive at NPD (who symptoms are generally social behaviors, rather physical symptoms) without first ruling out that those social behaviors are due to anxiety? Of course, we don’t know how well the writer of the MCS article reported the diagnoses, but I’ve seen enough stories of patients who had inept therapist who pile on various diagnoses without really helping the patient’s symptoms to suspect part of this patient’s problem was that he received “junk” mental health services.

      1. WilliamLawrenceUtridge says:

        For me the part that made me squirm was how incredibly strongly this matched up with the stereotypes of Hollywood Judaism. I mean really – this could be a description of Woody Allen really putting it on as part of a one-man comedy show.

        1. mouse says:

          Good Point WLU!

      2. DW says:

        I don’t see that as a lot of diagnoses. Anxiety goes hand in hand with many psychiatric diagnoses.

    6. mouse says:

      @brewandferment – I often get headaches with nausea if I am around intense perfume (or cigar smells) so I avoid them. I also get non-allergic rhinitis and eye watering that is triggered by some scents along with various other stimuli (abrupt temperature changes irritants, etc), And no – I don’t get them from walking by the apple tree in our neighborhood when it blooms, but the reality is that most natural scents outdoors are not near so intense as walking into a store that features scented goods (the store Lush is the worst) or sitting near to a person with strong perfume/cologne.

      Perhaps it is partly psychological, some sort of conditioned response, in which case I haven’t found it to be anymore in my control than how much saliva your glands eject when you smell shrimp scampi.

      Maybe you have a reference on CBT therapy or medication that has a high success rate for such a psychological condition and explain why I should have to undergo the expense and risks of those treatment so those around me can feel free to wear enough cosmetics to smell from a distance.

      I’m not sure why people feel the need* to scent a wide area around them to their preference. Really any perfume or other applied scent should only be detectable by someone at an intimate distance. I’m pretty sure Tim Gunn would back me up on that, without resorting to a diagnoses of MCS :)

      But, I don’t recall asking people to work around sensitivity to perfumes, beyond declining (sometimes repeatedly, they were so insistent) the perfume ladies in department stores who want to give me a headache and asking my husband to wear unscented deodorant (his previous scent was a problem, particularly in an enclosed space such as the car) If someone’s scent is bothering me, I try to move away.

      Sure – you maybe be dealing with a minority person who is merely being manipulative, but I believe that research shows that most people who are reporting these symptoms to their doctor are genuinely experiencing these symptoms. It is not a manipulative ruse to prevent some associate from wearing their favorite perfume.

      *Some people aren’t doing this intentionally. They just have adapted to the scent enough that they don’t realize how strong the scent is to others.

      1. brewandferment says:

        Hi Mouse,

        I’m sorry, I wasn’t clear enough about the level of scent to which I was referring. I have no liking either for an excess of perfumed persons–having to stand watch on the quarterdeck at liberty call in foreign port could sure be an exercise in breath-holding (and walking the passageways outside berthings would be just as bad for quite some time later…) to put me off lots of it myself. I meant no disrespect for those who object to similar levels of nasal assault and I wouldn’t wish a perfume drencher in the next cubicle on anyone.

        It’s just been my observations that there seem to be people who have a Princess and the Pea response to even the faintest of scents that they may encounter in passing, who are aggressive about proclaiming their response (unlike the Princess, who if I recall from stories was quite apologetic about her sensitivity) and those are the ones I was commenting about. Who want everyone in the entire building to wear unscented deodorant etc. There does indeed seem to be a correlation between sCAM users being loudly MCS, but I didn’t mean that about those who object to excessive levels of scent.

        But I still don’t understand the mechanism as to how the scent itself can be that big an issue–nor what other ingredient might be the true culprit. There are all those essential oil people out there who insist that smelling lavender for example can calm you–but how can that be anything other than an association? (For my part, I always associated lavender with fussy old ladies and find it less than soothing!) Which seems to be a conditioned response, not an actual physiological reaction. So it seems like teasing out the exact mechanism of MCS responses would be useful.

        1. Chris says:

          I am sensitive, but not that sensitive. I can smell deodorant on others but it does not bother me. Personally I think the sunscreen I am about to slather myself with has a stronger smell, but I am not going to sacrifice my almost translucent freckled skin to melanoma because someone does not like the smell.

          I am also very very allergic to nickel. I get rashes on my hands if I use the wrong sewing needles (I have non-nickel coated ones from Japan). But I now know that the reaction is between the nickel and my own perspiration. It is a sensitivity to my own chemical makeup along with nickel! I have learned to live with it without insisting everyone else remove their jewelry. Though I will not touch straight pins at a sewing event unless they are mine (I had to get a special type of pin for a fitting class, and fortunately there was a small head version that was not coated in nickel, I spend a long time reading labels at the fabric store).

        2. Laura says:

          I don’t understand perfume sensitivity either.
          My family doctor’s office has a sign up asking people not to wear fragrance. Both the allergists’ offices I’ve been too have such signs also. Allergists have told me people can have severe reactions to perfume.
          These are all mainstream MD’s.
          I have a very severe dog allergy. I have gotten sick for 5 days after riding my bicycle past a dog in a car 50 feet away, when I was downwind from it. It’s no longer quite so bad, with careful avoidance and allergy shots.
          However, my family doctor wasn’t willing to help me when I asked him to accommodate me so that I wouldn’t be at risk of allergic reactions to service dogs that might walk into their office, or purse dogs someone might carry in.
          Do people who are exposed to perfume get sick for 5 days from it? I doubt it. So why did my dog allergy matter so little?
          The allergists did give me the accommodation I asked for. I said, I’ll make appointments for first thing in the morning, and please schedule anyone who might have a service dog after me. And if someone comes in with a dog while I’m there, I’ll run out of the building and please give me my shot outside.
          But my family doctor wouldn’t do anything to help me with the issue. So for now I’ve been avoiding medical appointments other than at the allergist’s office.

    7. n brownlee says:

      ” it’s a character defect to insist that their wants are superior to everyone else’s (even if they are not–and I think many are not–consciously thinking that way.)” Yes. The ‘I’m especially sensitive’ people.

      Yes. I like scent- but there are many that I find unpleasant. And of course a lot of people, men included, wear too much scent. So what. I often encounter people who bathe so infrequently that not only do I know immediately where they are, I also know where they’ve been. You can follow their trails around the supermarket. Nobody seems to be insisting on a nationwide ban of filthy stinking non-bathers. Or even worse, gum disease carriers who are oblivious to their stench.

    8. corky says:

      I am one of those people who cannot stand the smell of certain perfumes, can’t walk through the cosmetic region of the department store, and can’t enter any of the stores that sell all those smelly candles and stuff. I buy only unscented soaps, etc. I also can smell organic chemicals very acutely, and get headaches from many of them (I hate going to the gas station!). it is a real pain when you work in a lab (xylenes and phenol are two headache triggers for me)! I have allergic asthma and what my allergist years ago called “hyper-reactive airways”. If I get on an elevator with or have to sit next to someone with strong perfume I will often get wheezy. I am the proverbial canary in the coal mine when it comes to smells. My husband and daughter do not share my skills and that leads to trouble when they can’t smell the varnish or the perfume and I am getting a migraine and can’t breathe. But there are many smells I do like, just in VERY small doses! So, if someone complains about your perfume or aftershave, maybe they aren’t being a “smell-nazi” but actually can’t tolerate it…..

  6. goodnightirene says:

    Oh dear.

    I used to think I had MCS (and I believe it is an “official” disease in Washington State, having been recognized as such by Gov. Gary Locke some years ago-I also think he, an otherwise very good man, was hoodwinked into signing onto this).

    Now I think some of the things I react to (perfume, carpet off-gassing, certain cosmetics) are just part of my many allergies. I simply try to avoid them., though I have to confess to flirting with a number of altie explanations and treatments in the past. In my defense, I quickly realized that a) the people pushing them were wackaloons and b) the “treatments” didn’t help. Years of allergy shots have helped some, but avoidance is still my best defense.

    In the interest of clarity, I have been cleared by a couple of shrinks. Although I have ADHD, my somewhat allergic reaction to a number of substances does not seem to be psychiatric. My allergist supports this. I was exposed to a lot of pesticides as a kid (grew up in Yakima–where they used to burn old tires in the spring to prevent frost damage, as well as a lot of wanton spraying) but I gave up the idea that this was the cause–thanks to ya’ll and my newly honed critical thinking skills. :-)

    I can assure you, however, that if I am in the same enclosed space with someone wearing certain perfumes, or especially certain after shaves or room freshener , I get dizzy, confused, and agitated. As soon as I leave the space, I get better and after a while, it goes away.

    A lot of nice people not thought of as “mental” report similar problems. We cannot all be basket cases or suffering from childhood trauma–nor should we be sucked into useless altie diagnoses or treatments. It might be nice if someone could look into it in a scientifically responsible way.

    1. n brownlee says:

      I’m with you, Irene. I enjoy wearing scent- but some perfume immediately stops up my nose and/or makes it run like a faucet. The sizing in new fabric makes me wheeze like a concertina- I can’t hang out in a fabric store for long. My allergist very firmly- and pretty loudly- tells me that true allergies cannot be caused by somatoform disorders, and that the ‘sixties fad for assuming asthma was “psychosomatic” was responsible for some child deaths.

      He also tells me that when you’re having a strong allergic response, heavy hay fever or wheezing, that ANY added irritant is likely to make it worse. I’m with him.

      1. simba says:

        That fad is still around. Also for anaphylaxis-type allergies. If the child just stopped looking for attention, dontcherknow, they would be able to eat peanuts safely.

        Maybe we could put peanuts into the food to prove it, if they don’t know it’s there they won’t get hives.

  7. Margaret says:

    I am allergic to about four or five specific perfumes. If I get a strong whiff of the perfumes that I am allergic to, my throat starts to close and I start choking. I also have the same reaction to some air fresheners. I also get hives when I eat strawberries and will get a rash if I use some specific laundry soaps. Oh and some years I will get hay fever.

    Re my perfume allergy, I used to work with a woman who felt that my allergy to her perfume was all in my head. After testing my breathing, my doctor said that I had a light case of asthma and prescribed me Ventolin. After I changed jobs and was not repeatedly subjected to a perfume that I am allergic to, I found that I did not need the Ventolin any more.

    Note that I am not militant about my perfume allergy. If someone on the bus is wearing a perfume that bothers me, I will say nothing, but will move away, etc., etc.

  8. thor says:

    All I can think of is Anthony Edwards on Northern Exposure and even back then I thought the whole thing was BS.

  9. keith83 says:

    I’m not a doctor or a scientist but i read SBM every day. I want to thank you all for the work you do in science and medicine and what you all are doing with this site. There is something frightening going on in the United States these days. People are skeptical of anything mainstream and they’re running to alternatives with full faith. We have always had the religious issues: creationism as an alternative to evolution and all of the superstitious nonsense being pushed on the general public by many christians and muslims, misunderstandings about sex and reproductive health and a sex negative culture with archaic notions about purity, homosexuality and women’s sexuality. We get stupid debates about marriage and contraception, wacky theories about dinosaurs and terrorism from islamofascists and anti choice crusaders. We are used to dealing with these silly people and we are sick from the horrific acts. A lot of these ideas have found a home and an advocate in the Republican party (except islam obviously). With folks like Glenn Beck and others like him, all sorts of paranoid delusions with a right wing point of view have grown popular and “everything’s a conspiracy” folks like Alex Jones have stoked similar paranoia about the government, business, medicine, airplanes and nonexistent secret organizations. I’ve found that the Jones fans are either republicans or they don’t vote at all. While the GOP has all these religious crazies, libertarian loons and paranoid delusional gun nuts running around, government has ground to a halt, people are getting shot and an embarrassing chunk of the population thinks that our moderate democratic president is a secret commie, jihadist and/or at least not American and disqualified from his office. This is all too much to handle but the right wing fringe becoming mainstream conservatism is only part of our issues. When folks like Michael Moore stoked conspiracy theories about 911, I never imagined it would become so widespread. While 911 conspiracy theories are popular with both lefties and righties, conspiracy theories as a whole are becoming increasingly popular among non right wingers. Many of these theories are related to science and medicine. We faked the moon landing….. Monsanto is poisoning people…. airplanes are dropping mind control chemicals on us…. fluoride is for mind control…. The list goes on and on. I find that someone who believes in one conspiracy theory, they likely believe in them all (the exception being the JFK assassination, which is believed to be a conspiracy by most people even those who don’t buy the other theories). Religious peddlers, CAM fundamentalists, yoga cultists, naturopathic activists and spiritualism advocates are swooping in on a paranoid, delusional and angry population. Even my mother tried to tell me that GMO food is bad. She was confused when I went in her refrigerator and threw her corn in the garbage. After explaining what GMO is, she seemed to understand a little better but I am not sure if she gets it. Family and friends are spouting off incorrect nonsense about food (raw food is better for us? Vaccines cause autism? Who is telling my mother and friends this stuff?) They’re going to chiropractors and cutting gluten out of their diet while most of them work in doctor’s offices and hospitals. Daytona Beach is a service economy so health care and food service are the most prominent employers. While folks who work at restaurants will spout of the occasional racist remark, bilderburg group/illuminati theory, FEMA camps/death panels gibberish, moon landing hoax or ancient alien theory; it’s the more educated people and health care professionals who are embracing CAM, homeopathy, acupuncture, butt rinses, chiropractic and bizarre theories about food. The other types of conspiracy stuff, racism, anti government nonsense is frightening and needs to be dealt with and perhaps replacing some math classes and electives with more biology and critical thinking can help with all of this stuff, but the growing popularity of ridiculous food myths (raw food good, gluten and GMO bad) and the craze of replacing medicine with supplements and magic are troubling me the most. I talk to a lot of people. Reasonable people who are sane and bright are believing the craziest BS. We are not doing a good enough job. We might not be able to deal with the wacky beliefs held by the religious or the conspiracy theories being spread by right wing paranoiacs and bigots in the short term. It might not be worth our time trying to dispelled the ancient alien nonsense tomorrow. Some people are just always going to fall for the FEMA camp or death panel myth. But otherwise intelligent people are buying homeopathic remedies and eating raw food. They’re listening to chiropractors and refusing to get their children vaccinated. While i applaud the work you all are doing and i absolutely love this crucially important site, we have to do more. I just don’t know what we can do. How do we create an alternative to the alternative? It might take tons of resources. I can’t thank you enough. I’m trying to do my part too and you all give me ammunition and inspiration.

  10. keith83 says:

    I forgot to add that even though I am a democrat, the political cover provided to a lot of this hippie pseudoscience by the democratic party. While the Democrats are mostly successful keeping liberal fringe elements away from them when it comes to policy and campaigns/platform, the GOP has allowed the once mature party of lincoln, Eisenhower and nixon. The Democrats have let the food scare folks and other hippie and supernaturalist elements have their way in several states. I need to research more about it, but a few SBM posts have shined a light on issues with some past and current surgeons general with regards to magic medicine and the executive branch CAM post. I find it puzzling that with all the wonderful things we are learning about outer space, earth’s past, the ocean and physics, science isn’t becoming more popular and new discoveries are not capturing the attention and imaginations of the public. There is so much work to do. I think that dispelling pseudoscience should be a top priority for leaders in academia, science, business, government and the media. Do we need more and better celebrities on our side?

    1. WilliamLawrenceUtridge says:

      Read Science Left Behind, there is no end of the political spectrum, indeed no human alive, who is immune to irrationality. It’s something that skeptics themselves need reminding of.

      Also, you might want to recommend Nathanael Johnson’s Grist.org series on GMOs to your mom, it’s very readable an lays out the issues quite clearly.

      Generally conspiracy theories are an attempt to bring order to a confused and disorganized world – it’s oddly more comforting to believe that there is someone in charge, even if it’s someone crazy or nefarious, than that it’s all just random shit happening. And I suspect that often the conspiracy theory is merely an excuse, a gloss, to justify inaction (most conspiracy theorists don’t vote and are actually deeply unhappy due to feelings of lack of control).

      1. keith83 says:

        Thanks. I’m going to check out the book and the grist.org series and see if my mother will take the bait. The danger I fear is that the massive flight from common sense and science towards paranoia and alternative “medicine” is creating an environment that is unsafe for some of us. We’ve seen how rhetoric can inspire violence in acts of terror carried out in the name of the anti choice movement, the militia movement, various right wing instigators and the occasional left wing terrorist. I worry that since the enemies and conspirators do not exist, the anger will be directed at you or me. Violent rhetoric has already turned paranoia into violence against unsuspecting civilians and law enforcement. When this convergence of rhetoric and paranoia finds the right vessel, bullets fly. I’ve encountered people who truly believe that Chem trails are poisoning us, the government is hiding something deadly about GMO and scientists are complicit in these fantasy crimes against the public and humanity itself. This is causing a very real anger. One of my dearest friends who I grew up with no longer speaks to me because he believes I am a member of the illuminati. Now one might suggest that he is unhinged but other friends and even family have suggested, when this was brought up that they don’t know that I’m NOT an illuminati. This suggests the belief that such a thing exists and most continue to associate with me, at least one has cut off ties with me. The straw that broke the camel’s back with him was a conversation about GMO. He was adamant that corporations were paying the regulators and scientists to lie and promote GMO. I countered that the oil industry is pretty powerful and yet they haven’t convinced a single climate scientist to deny global warming. This trickery on my part convinced him I am of the illumunati. I’m sure the photos of me with various elected officials didn’t help matters. At any rate, in the absence of real villains, we are all potential targets. And the calm and moderate folks who believe conspiracy theories and the normal people embracing lies about science and CAM they enable the more violent elements by legitimizing their beliefs. CAM and a general culture of rejecting mainstream science, media and information in favor of magic and bogus evil boogeymen and pseudoscience is growing. I am surprised every day by how many people are embracing CAM etc.

      2. ebohlman says:

        I think you’ve nailed it; the common thread running through keith83′s description is that the people involved are perceiving that the amount of control they have over their own lives is declining and they’re resorting to magical thinking as a way to regain a perception of control.

        1. keith83 says:

          Yes. Definitely. What can people like me do to stem the tide? What is a practical approach I can take, at least towards CAM enthusiasts or sympathizers that might make somebody consider a SBM alternative to their alternative or magic trend? The conspiracy stuff is a cultural, political and media issue that will never go away but my hope is that the current popularity of such wackness might begin to dissipate after the right wing response to the president settles down, after the novelty of the Internet dies down for some of the crazies who were way late to the party and with hope younger folks will lose interest in “conspiracy theory as religion” over time. What can someone like me do to encourage skepticism of CAM or a healthier view of science? Many of the folks I talk to, like my mother and a plethora of my friends do not read much. They embrace CAM through word of mouth even as they work for doctors who I assume aren’t paying attention to the supplements, diets and chiro/acupuncture / alty tendencies of their staffs?

  11. JimR says:

    I worked with a lady who was symptom free for much of her life. She was assigned a new, coveted enclosed office with low bid carpet. Over a period of months she became chemically sensitized to the formaldehyde that out-gassed from the new carpet. Moving to an open area solved the problem, but she reacted immediately to any subsequent exposure.
    My point is that if a person develops an allergy to some chemical, it takes very little exposure to trigger a reaction. I am proposing that prior exposure may be part of someone’s problem. No amount of CAM will cure that. Also I doubt one can be desensitized.

    1. WilliamLawrenceUtridge says:

      Given formaldehyde is produced by the body, I wonder if that’s what she was actually reacting to.

    2. Spectator says:

      Carpet made in China?

      No telling what might have been in that!

      Hazarding an uninformed guess, perhaps some VOC not normally found in finished carpets was saturated or at least present in excess in that carpet.

  12. whoa says:

    Mainstream medicine might seem to know a lot about health and illness (it certainly promotes itself as having an excellent understanding), but the sad truth is that most diseases and disorders are understood poorly or not at all.

    When patients suffer from diseases that mainstream medicine has not yet recognized, they are often accused of hypochondria. If a mainstream MD doesn’t understand it, it must not be real.

    For example, before research showed that Lyme disease is a bacterial infection, the patients were diagnosed as mentally ill and often put in mental hospitals.

    Before fibromyalgia was recognized as a real symptom, patients’ symptoms were considered to be psychosomatic.

    So here we go again, accusing patients of being mentally ill or hypochondriacs if they suffer from environmental toxins.

    If the evidence is lacking, don’t you think maybe that’s because the government and big drug companies have not decided to fund research on this?

    No, you never think of that. Science-based medicine only acknowledges diseases that Big Drug has found reasons to fund research for.

    You are so afraid people will risk their lives by trying natural treatments. Horrors!

    1. Andrey Pavlov says:

      Ah, and now woah’s true colors come out. Just an anti-scientific medicine ideologue who doesn’t understand how science actually works.

      Using an example from over 100 years ago to somehow try and indict scientific medicine today? Really?

      And conflating the idea of an unknown syndrome with the idea of psychosomatic illness? I won’t even bother to unravel that sloppy thought.

    2. AdamG says:

      The fact that new evidence caused people to reevaluate certain hypotheses in the past does not mean that your particular hypothesis is true.

    3. weing says:

      “When patients suffer from diseases that mainstream medicine has not yet recognized, they are often accused of hypochondria. If a mainstream MD doesn’t understand it, it must not be real.”
      Where do you get that? Check this out.

      1. WilliamLawrenceUtridge says:

        That’s excellent and I’m happy about this. Hopefully it will start untangling the contributing factors to a host of unknown-etiology conditions.

    4. WilliamLawrenceUtridge says:

      Mainstream medicine might seem to know a lot about health and illness (it certainly promotes itself as having an excellent understanding), but the sad truth is that most diseases and disorders are understood poorly or not at all.

      Really? Which diseases and disorders?

      When patients suffer from diseases that mainstream medicine has not yet recognized, they are often accused of hypochondria. If a mainstream MD doesn’t understand it, it must not be real.

      Um…not really. It’s more that when a patient suffers from purely subjective symptoms with no objective findings that make no sense physiologically, then a psychogenic condition is suspected because, well, people do express psychological stress and unhappiness in physical-appearing symptoms. In some cases a non-psychological etiology can be identified, in other cases it can’t, and in many cases patients demand it be considered a purely physical illness despite the lack of evidence for a single cause. Research and diagnosis is hampered by the lack of a specific etiology, which means inevitably you will lump people together with different etiologies – including some with purely physical and others with purely mental causes. And all this occurs within a society that disparages purely mental suffering (which is why some people in psychological pain express that pain through a physical metaphor). Good doctors will recognize and attempt to address the suffering no matter what the cause, and in the absence of any single defined treatment will provide ongoing support and assessment. Quacks will charge you for placebos, no matter what is actually wrong with you. And for people who are expressing a purely psychological problem, this actually perpetuates their suffering by continuously diverting them from addressing the actual cause.

      For example, before research showed that Lyme disease is a bacterial infection, the patients were diagnosed as mentally ill and often put in mental hospitals.

      Are you sure about that champ? Seems like there was a generally-widespread recognition that Lyme disease was something, though a linking of cases together didn’t happen for a long time.

      Now, chronic Lyme disease is totally different, it’s one of those garbage, wastebasket diagnoses that some people love to wear with the glory and ardor of an Nascar fan wearing an American flag and quacks are perfectly willing to charge you lots of money for unproven treatments.

      Before fibromyalgia was recognized as a real symptom, patients’ symptoms were considered to be psychosomatic.

      You don’t think there’s a psychological component to at least some patients diagnosed with fibromyalgia?

      So here we go again, accusing patients of being mentally ill or hypochondriacs if they suffer from environmental toxins.<

      Well…yeah, because in placebo-controlled trials the “patients” don’t get “sick” when they are exposed in blinded conditions. That’s kinda the very definition of, if not hypochondria, then at least a psychological condition.

      No, you never think of that. Science-based medicine only acknowledges diseases that Big Drug has found reasons to fund research for.

      You’ve a very narrow definition of science and a poor grasp of how drug and disease development occurs. Generally case definitions occur before treatments are tested, to exclude those who have similar symptoms but not the actual disease. Drugs can’t be approved for new conditions until it has been proven that the new condition exists and can be treated by the drug. I’m not sure how you think it’s supposed to be done, but you seem to be just saying things essentially at random.

      Meanwhile, quacks are more than happy to charge you for multiple visits to receive treatment for a disease never proven to exist and never proven to respond to their particular quackery. But you’re right, only drug companies are greedy and unethical.

      You are so afraid people will risk their lives by trying natural treatments. Horrors!

      A list of natural things that are dangerous:
      - snake venom
      - spider venom
      - C. difficile
      - Smallpox
      - Polio
      - Deathscap mushrooms
      - Quicksand
      - Lions
      - Poppies
      - Fava beans
      - Aristolochia

      My point being, “natural” doesn’t guarantee safety (or efficacy).

    5. DW says:

      I think it’s rare that doctors tell patients with medically unexplained symptoms that they are “mentally ill” or “hypochondriacs.” I think more often, the doctor has actually said something like, “The test results are all negative; we can’t find anything wrong,” and the patient HEARS, “You’re a hypochondriac” … often because this is not the first time a doctor has had to tell them the tests are all negative.

      1. James says:

        A doctor told me this before.
        It turned out I had narcolepsy.
        Your mileage may vary.

        1. DW says:

          You recall his or her exact words? The doctor said, “You’re mentally ill,” or “You’re a hypochondriac”? I doubt that. I’m guessing the doctor suggested psychotherapy. This is sometimes appropriate medical advice.

          1. James says:

            His words were “I think you are a hypochondriac”.

            The problem is not that doctor’s should not prescribe psychotherapy.
            The problem at least in my case was premature closure.

            Premature closure is a very common mistake doctors make.

            I came to realize that you cannot expect all doctors to be diagnostic geniuses.

            Everyone has weakness.

            Given the time constraints of doctors it is hard to expect them to git it right all the time with the proper tools.

            This is why I am a big supporter of software assisted diagnostic tools.

            1. DW says:

              Okay, well, I’m sorry then. I don’t think it’s advisable for doctors to go around telling their patients they’re hypochondriacs. I suppose in some cases it might open someone’s eyes, or might be taken in the right way if the conversation were fairly light hearted. But if the person is a REALLY confirmed hypochondriac, being told so is not going to help and is just antagonistic. The doctor should be careful to state neutral facts, rather than make accusations or label the patient. “This is what the tests show (or don’t show).” “This is what your symptoms suggest, and we have already tested for it.” “I don’t have any more answers for you,” etc.

              I don’t dispute that there exist doctors who are enormous assholes.

        2. mouse says:

          James “A doctor told me this before.
          It turned out I had narcolepsy.”

          How about if they don’t tell you, they just tell another doctor? A few years ago, I started having symptoms of fatigue, joint/muscle pain, shortness of breath, parathesthia, sensation of a lump in my throat and redness puffiness around my eyes, eventually side/back/abdomen pain. (Even I think this sounds crazy) My internist ordered a bunch of tests and sent me to different specialists for various complaints. I saw the ENT before testing/results were complete. Based on history/physical he reassured me nothing ominous was going on and these sensations often resolve on their own. Cool! Well it was cool until I got to the Rheumatologist for a follow up visit on some positive inconclusive test results. He told me that the ENT had written him with a diagnoses of *Globus Hystericus which mean that the lump sensation was caused by anxiety. I was surprised because it was the first I had heard it. He did immediately followed with “I don’t think your symptoms are caused by anxiety (shrug, shrug.) and offered me a trial of a milder medication – which they sometimes do when a connective tissue disease is suspected but not conclusive.

          I wouldn’t have minded so much if the ENT had suggested the cause was anxiety if he had just talked to me about it. At least we had some back and forth I could have asked if the results of the outstanding lung function, antibody tests would make a difference in his diagnoses or I could have asked for coping tips.

          *OMG my uterus is in my throat? :)

          1. WilliamLawrenceUtridge says:

            I don’t think doctors can, in aggregate, win here. Some patients will appreciate being told “I think it’s a reaction to psychological stress” (or whatever), some will accuse the doctor of trivializing their problem.

            Medicine is messy because people are messy.

            1. mouse says:

              @WLU – Well I would suggest that one winning proposition would be withholding a psychogenic diagnoses until all the test results are in.

              Regardless – I think you missed my point or I didn’t make it well. The point wasn’t to express outrage that medicine isn’t perfect for each individual. My point was to add to Jame’s “milage may vary” story.

              Harriet Hall expressed an excellent way to work with a patient with symptoms that are not diagnosed and may be pyschogenic. I was just pointing out that not all patients receive that approach. In reality there is a lot of diversity in how doctor diagnoses, discuss (if at all) or treat these issues.

              1. KayMarie says:

                I’ve never met a doctor that opens with that.

                And I think most of us forget the medical history and physical exam does create test results. Although some will bring it up after taking a medical history and listening to the heart, palpating the abdomen as is appropriate. I do hear of some concern docs don’t have as much skill with that as they may have in the past, but still most docs do something before just saying you are a head case and sending you out the door with nothing (and even then most of the time that is the patients interpretation of what the doctor did, not what the doctor was trying to do).

                How many tests is “all the the test results”? I mean some people would say every human needs a whole body CT scan even when healthy to have all the results (although usually they are services that have to pay for their whole body CTscan they bought just to give the “just in case” tests to the worried well.

                Tests are not always harmless, and how many excess cancers do you need to create before you go with what you figured out 3 appointments and 15 tests ago?

                I actually want to know if the doctor thinks that the tests are very unlikely to see something as I may decide not to do them because I have a different risk avoidance belief than most. And as I’ve said elsewhere, I’ve not done tests because trying the treatment blind in some cases is less harmful than doing the test.

              2. mouse says:

                @ KayMarie – I’m sorry – I’m confused “opens with what”? The ENT did not tell me I’m a head case and he didn’t open with it. If that’s what you mean…or are you addressing James comment?

                I didn’t ignore the exam or history portion of the visit. I did think it was important because one reason I was at the ENT was to rule out cancer, tumor or thyroid nodule causing the sensation. I was happy to receive the new that wasn’t any of those things.

                The ENT gave my rheumatologist a diagnoses of “globus hystericus” you can look it up although it seem to be considered a somewhat out of date term. It means the sensation was caused by anxiety or depression. But he didn’t tell me the diagnoses. No one said I’m a head case. (I do have anxiety I put that on my health forms). I did say I know my symptoms sound crazy in my comment. Maybe that is the confusion.

                How many test are “all the test results”? They were the first round of test that the rheum ordered after my internist sent me there due to an ANA of 1280 along with the symptoms I listed above and a previous diagnoses of rhaynaud’s. There was antibody testing, various inflammatory auto-immune markers, a pulmonary function test because I had pretty severe shortness of breath, to check for asthma and rule out interstitial lung disease (associated with the diseases the rheum was looking at). Sorry if this is gibberish. I think it kinda makes sense if you are familiar with connective tissue diseases, but not much otherwise.

                The sensation in my throat seemed to be associated with the shortness of breath as well as position (raising my arms or bending over), so I thought maybe nice to get results on pft and inflammation before coming to the conclusion that the sensation was caused by anxiety.

                As to whether the doctor is unlikely to see something in the tests ordered. I don’t know what the odds where. Rheumatology seems odd, I’m not sure if they knew. Some of the diseases that they were look at were quite serious, with a positive result it’s possible that they would have wanted to look for organ damage and prescribe steriods or other stronger immune suppression drugs to prevent damage.

                Luckily most of the tests came up negative, only showing mildly low c3 and C4 (complements) So – not enough to rule out auto-imune issues, enough to suggest that it was a good idea for biannual check-ins for a bit, but also enough to suggest that nothing really dangerous is going on.

                Hope that makes sense.

              3. DW says:

                “withholding a psychogenic diagnosis until all the test results are in”

                Why? This is a serious question. I am not sure why we are putting psychogenic diagnoses somehow off to the side, separately, as if they are some entirely different animal than any other diagnosis. They’re not. The psychogenic explanation is one possibility among many. There is no particular reason to somehow “hold it until last” or to never mention it until every single other possibility has been discussed. The doctor should share his/her differential diagnosis. To actually “hide” one of the possibilities from the patient is not respectful, and not good medicine, in my opinion.

                This would seem to further the whole split between mind/body, because it suggests to the patient that if it’s psychogenic that’s somehow shameful, and we’re sorry to ever have to even mention the possibility. Why? The doctor should be neutral, as far as possible, and explain to the patient what the possibilities may be. If in fact a psychogenic diagnosis seems more likely than other possibilities, there’s no reason not to mention it, in fact I think the doctor is obligated to mention it.

              4. KayMarie says:

                When you say at least wait for the test results kind of implied to me a doctor who routinely dismisses the patient immediately. That is what I was calling just “opening it with it” rather than actually do their job.

                I work on a support group for people with functional GI illnesses. I actually know what that is and have talked, well typed, with plenty of people suffering with it. I know that it is diagnosed by what the patient says as there is not one test in all the world that will prove it. Whether you need a test or tests to rule other things out will depend on other symptoms and maybe a quick feel of the throat (and I have had doctors that won’t touch patients and one missed mononucleosis which the doctor that diagnosed me did not need the confirming test to tell me with complete certainty what I had, she diagnosed it by feel. My college needed the test, but the doctor did not so she did it anyway, but it really wasn’t needed).

                A rheumatologist wouldn’t know what a functional esophageal problem sounds like from the patient description. That is why you go to the guy/gal who sees these things day in and day out. Like I’ve had a rash that wasn’t really obvious/text book looking to my primary care doc so he sends me to the dermatologist who sees it all the time and knew it was rosacea just by sitting down across from me as he knew the subtle versions from seeing someone with my symptoms weekly, if not daily.

                Head case is what a lot of the patients I talk to say their doctor called them (even though doctors don’t usually actually say that and often used the approach Dr. Hall described if you can get past the patient’s anger to get to what happened) when they get a diagnosis of a functional GI illness (doesn’t matter which one, and so many of them are so badly named and so difficult to explain to a patient).

                Most of them are according to the guidelines best diagnosed based on the medical history and the lack of symptoms of things that would indicate you need the tests. More and more testing is usually not ever shown to do the patient any good (usually makes things worse if you run people through the gauntlet and compare them to those you don’t), and generally have an extremely low chance of finding anything, unless there are also symptoms of the other things.

                Now I went through one thing with sleep disorders where I had to go through test after normal test after normal test, but we did have one thing on testing protocol from the first test that had to be redone (he couldn’t place the sensor the first time) and finally we saw something. I can verify that all these tests, even though the doctors believed I was suffering I knew they believed me that something was wrong was so immensely stressful that even finally finding something may not have even been worth it. Even though leaving it completely untreated could have long term consequences I’m pretty sure the stress of those months could have taken as many years off my life. And I probably do sleep a lot better now than I would have without all that, but I still get emotional about the complete an total stressful nightmare that was.

                I know how hard it is to accept certain conditions as no one can prove them. I just find the attitude that more testing is always better and a doctor can’t possibly know without the lab telling him things a pet peeve of mine. Sorry if you didn’t deserve my peeving.

                Now the doc should have been up front with you about what he was going to tell your other doctor. But I can understand why sometimes they’d rather just put it in the medical record for the other doctors.

              5. mouse says:

                KayMarie – Thanks for the clarification. Also “I just find the attitude that more testing is always better and a doctor can’t possibly know without the lab telling him things a pet peeve of mine.”

                Generally I’m not for more testing, I’m not for less. I kinda just try to figure out what the standard of care for a particular issue is and go along with the doctor as long as they seem in that realm and have logical reasons for the tests. But, if the doctor orders the tests for a good reason,
                It seems the “team” should take the results into consideration.

                It could be that the ENT spotted something that indicated the lump sensation was clearly functional. If he wrote it in the notes my Rheum didn’t tell me. The rheum seemed unconvinced by the anxiety explanation – and he also sees alot of patients with my symptoms – or maybe he too was “humoring” me. I am not psychic I can only make my decisions based on what people tell me.

              6. mouse says:

                DW “Why? This is a serious question. I am not sure why we are putting psychogenic diagnoses somehow off to the side, separately, as if they are some entirely different animal than any other diagnosis. They’re not. The psychogenic explanation is one possibility among many. There is no particular reason to somehow “hold it until last” or to never mention it until every single other possibility has been discussed. ”

                I actually didn’t mean, nor did I say one should generally hold a psychogenic diagnoses off to the side and not consider it in the differential until every concievable test is given.

                I am fine with it being in the differential. I would have been willing to discuss it with the ENT – had he brought it up. I could even imagine a possible scenario where he gave me a good reason that the positive indicators for his diagnoses over rode any possible test results for the other conditions. But I could not get ANY of that information because he did not discuss the diagnoses with me. I have to make some assumptions, based on the other doctors who were willing to discuss their diagnoses with me, which incorporated my test results.

                Look – Three of the four diseases that were in the dermatology/rheumatology differential due to several of my signs and symptoms cause changes to the connective tissue in the throat/esophogus/airways, two are disabling possibly fatal without treatment. So yeah, I kinda wanted to know if I had one of those diseases before deciding that my symptoms were due to anxiety.

                It’s not like I wanted tests for every random disease that can cause one to feel a lump in the throat before getting a diagnoses that it was due to anxiety. I just wanted to know what was going on in the context of my other symptoms, signs, test results.

              7. KayMarie says:

                Generally the research I’ve read on functional GI illnesses supports the smallest number of tests is better practice than the “do every possible test for any disease that could ever effect any human ever” which is what a lot of people think “rule other things out” means.

                A lot of things you can rule out just based on there being no symptoms to indicate those other things.

                For example when I consulted Dr. Pubmed about what I finally figured out was exercise intolerance not general fatigue. Based on being 48 and in relatively good health, anything that killed you by age 20 or caused severe disability, or made it unlikely one would complete elementary school when I have a post-graduate degree was ruled out without any need for tests.

                I initially ruled out the diagnosis we came to (as I did bring all this to the doctor) because of some potential complications (acute kidney failure) but they have found you can have a milder version of it so may be why I avoided that sort of thing. That and I never really pushed myself that hard as I don’t tolerate medium effort so never forced myself to push it to the limit.

                Now maybe it is because my doc does some research into decision making around whether medical tests are appropriate or not for a given patient (are the risks worth the benefit)…we decided not to do the painful confirmatory test as we could try the treatments without it as they were much less painful and dangerous than cutting off body parts for evaluation.

              8. KayMarie says:

                FWIW my understanding of “functional GI illness” is not they are “just” an anxiety symptom. Although that is a common interpretation of them. I think that is changing, but it is slow and doing some dissemination research myself getting something new to replace something people were taught for years is not always quick, or easy.

                Anxiety does make them worse (and tends to make you more aware of the unpleasant sensations) but it seems something else is underlying that. Like anxiety isn’t the one true cause of asthma (although people used to think that, too). The inflammation is underneath that even if increased anxiety may trigger asthma symptoms or increase the severity of the symptoms.

              9. mouse says:

                also @ DW and KayMarie

                It’s SBM so I wanted to give you the evidence behind my opinion that this particular diagnoses should have waited for the test results.

                GI functional disorders are outline in the ROME III. As far as I can see this is the evidence based approach for diagnosing functional GI disorders. The ROME document criteria for functional esophageal disorders.

                “A4. Globus
                Diagnostic criteria* Must include all of the following:
                . Persistent or intermittent, nonpainful sensation of a lump or foreign body
                in the throat
                . Occurrence of the sensation between meals
                . Absence of dysphagia or odynophagia
                . Absence of evidence that gastroesophageal reflux is the cause of the symptom
                . Absence of histopathology-based esophageal motility disorders”

                I was being tested for scleroderma, sjögren’s syndrome, systemic lupus erythematosus and dermatomyositis (based on previous signs and symptoms) They are described here in this article about esophageal disorders in
                Musculoskeletal Diseases.
                http://www.medscape.com/viewarticle/577127_4
                I won’t quote all the bits a pieces, but it’s there if you want it.

                It doesn’t appear the ENT could say that I was absent of “histopathology-based esophageal motility disorders” without those test results.

                Regardless – the lump in my throat sensation, along with several other symptoms went away about 1-3 months after starting the Plaquinil, but it could have been natural regression, or maybe a reaaaaally sloooow placebo effect.

                If either of you have evidence that not doing the tests or diagnosing globus hystericus before connective tissue disease testing is complete is beneficial to the patient, I’m happy to look at it. I’d be curious what approach it recommends.

              10. mouse says:

                @KayMarie on Functional GI “Anxiety does make them worse (and tends to make you more aware of the unpleasant sensations) but it seems something else is underlying that. Like anxiety isn’t the one true cause of asthma (although people used to think that, too). ”

                That’s interesting. I had not heard that. I was aware they were making some connections between inflammation and anxiety, but not to FGI.

              11. DW says:

                Mouse, I’m not trying to diagnose you – I have no idea whether in your particular case the doctor followed an appropriate protocol. I was just objecting to the idea that anxiety or some other psychosomatic involvement should be the diagnosis of last resort – set aside until everything else, reasonable or otherwise, has been disproven. I see no reason why anxiety or other psychosomatic causes shouldn’t be just as high as anything else in the differential. Presumably a doctor works through a differential in order of likelihood. If in fact anxiety (or similar cause) is a prime suspect from the start – because the condition is very commonly caused by anxiety and/or the doc has seen many similar cases – then that is sometimes the first, not the last, possibility the doctor should be pursuing. You could just as reasonably suggest that psychosomatic causes be ruled out FIRST – BEFORE proceeding to a long round of expensive, invasive, time-consuming (patient misses work, etc.), and stressful testing that the doctor suspects from experience is unlikely to shine any light on the problem. We have a crisis of unnecessary testing already.

                I’m not unfamiliar with this myself – coming in complaining of vague stomach upset and being advised to try a few Tums, avoid fried foods – that might help, call me in a couple of weeks if not … the implication was pretty clear that the doc saw no cause for alarm regarding anything serious and sees a gezillion people with stress-related stomach issues every friggin’ day of the week. There was no need to take offense.

          2. mouse says:

            DW “I was just objecting to the idea that anxiety or some other psychosomatic involvement should be the diagnosis of last resort – set aside until everything else, reasonable or otherwise, has been disproven. ”

            Okay – but I never said that it should be set aside until everything else, reasonable or otherwise has been disproven. You read that into my comment. In my initial comment I said “I wouldn’t have minded so much if the ENT had suggested the cause was anxiety if he had just talked to me about it. At least we had some back and forth I could have asked if the results of the outstanding lung function, antibody tests would make a difference in his diagnoses or I could have asked for coping tips.”

            I don’t understand how that comes across as “anxiety or some other psychosomatic involvement should be the diagnosis of last resort – set aside until everything else, reasonable or otherwise, has been disproven.”

            Now I can understand that you might object to the idea you stated. I just want to make it clear it’s not an idea that I ever espoused.

            Also I didn’t think that you were trying to diagnose me. But you asked why the test results should have been considered before coming to the conclusion of a psychogenic cause and there is no general answer to that question. The answer depends upon particular diseases that the signs and symptoms point toward and the risks/benefits of diagnosing each early or late. Maybe I should have just said that. I am not the best at coming up with good summaries.

            You said “You could just as reasonably suggest that psychosomatic causes be ruled out FIRST – BEFORE proceeding to a long round of expensive, invasive, time-consuming (patient misses work, etc.), and stressful testing that the doctor suspects from experience is unlikely to shine any light on the problem.”

            How do you rule out psychosomatic causes?

            “Presumably a doctor works through a differential in order of likelihood.”

            Well kinda, but they are also suppose to offer some early consideration toward ruling out uncommon conditions that have serious consequences if the signs and symptoms are consistent with those diagnoses. Some of that ruling out can be done with a physical exam, some need tests. This is the process I was trying to describe. I’m not sure if it didn’t come across because I didn’t write it well or because you missed a particular portion of my comments.

            Look, It sound like my tone contained enough annoyance that you felt the need to euphemize at me (;)) Although I was mildly annoyed with you, I also get annoyed that all the silly details and complexities of my health make it difficult to communicate my concerns clearly. And I get annoyed when I talk about the topic, just because – uncertainty, not really knowing the best course of action, it’s annoying. I guess THAT annoyance which is not directed at you, was also coming through, unintentionally. Sorry about that.

            1. DW says:

              Hi Mouse -
              What I replied to was your suggestion that the doctor “withhold a psychogenic diagnosis until all the test results are in.” Perhaps we could agree that what is meant is that the doctor withholds ANY diagnosis until all the relevant test results are in? The psychogenic diagnosis is not in its own separate category, and the doctor shouldn’t be any more or less willing to discuss this possibility with the patient, than with any other possibility he/she is considering in the differential diagnosis. That’s all I’m saying. (And I certainly agree “hystericus globus” or whatever it was, should not have been noted in your records without discussing this with you.)

              “you asked why the test results should have been considered before coming to the conclusion of a psychogenic cause and there is no general answer to that question. The answer depends upon particular diseases that the signs and symptoms point toward and the risks/benefits of diagnosing each early or late.”

              Agreed. It’s going to always be about the individual patient, as well as, as you say, the risks of missing something important or life-threatening.

              “How do you rule out psychosomatic causes?”

              Well, again this will be individualized, but one way is as I described – trying to gently dissuade someone who has no particularly alarming symptoms or no other indicators of anything serious, no relevant medical or family history, no other recent changes, from pursuing extensive testing for fairly unalarming, common symptoms. This is where the suggestion of counseling may come in, or relaxation techniques, or simple painkillers or such. _If this works_, and there were no other serious symptoms or signs, psychosomatic or stress related is a pretty good conclusion.

              The difficulty is that the more likely it is that the symptoms have a non-organic cause, the more like it also is that the patient will resist – often very angrily – any suggestion that a less aggressive course be pursued, including perhaps speaking with a counselor. This in itself often becomes an indicator that the problem may be psychological. If a person is truly open to finding out the root cause of the problem, presumably they’re open to trying therapy. If there’s some possibility that’s going to relieve your pain, why wouldn’t you do it? But if the person has a lot of emotional energy or self-identity invested in “being sick” and “being treated for a medical problem” per se, the idea of therapy is not going to interest them much.

              One incredibly good indicator that a problem is psychological is that the person actively resists treatment that might actually help (whether psychotherapy or otherwise).

              Many cases have complex, mixed causes. It is very common for a chronic somatizer to report to a doctor minor symptoms that actually do have clear physical causes – after all, hypochondriacs get sick too, just as often as the rest of us, not to mention getting injured in accidents, or just getting poison ivy or something. But it’s virtually a law that if there’s some minor remedy that will probably help or at least reduce physical discomfort, like a simple painkiller, the chronic somatizer will hotly refuse, often claiming this treatment itself makes them sick, or is dangerous, or the doctor’s trying to kill them etc. I mean, many of these people will not so much as take an aspirin for a headache. Irony.

              Remember, these are often the SAME people who refuse vaccines, think all antibiotics are a government conspiracy etc.

              That’s really just some thoughts – I’m not saying that it is _easy_ to diagnose a psychosomatic problem. Just that it does not, per se, deserve either a prominent place at the top of a differential list, nor being relegated to the bottom with “Let’s rule out everything else in the universe first.” It’s going to be individual every time.

              “Presumably a doctor works through a differential in order of likelihood.”

              “Well kinda, but they are also suppose to offer some early consideration toward ruling out uncommon conditions that have serious consequences if the signs and symptoms are consistent with those diagnoses.”

              Right. I’m talking about when they signs and symptoms are _not_ consistent with anything serious. I’m sure we all agree that any patient who consults a doctor who has signs of something serious needs a full work-up, and psychosomatic causes would be very low on this differential. You might come to suspect somatizing eventually, but you would start by ruling out serious medical conditions.

              (If nothing else because, let’s face it, although they cause great suffering – and they certainly lead to a lot of calling out sick from work – psychosomatic disorders generally don’t kill people.)

              Likewise, if I’ve annoyed you personally I’m sorry, it was certainly not my intent!  I just like debating. :)

              1. mouse says:

                Hurray, a reply button!

                DW “Perhaps we could agree that what is meant is that the doctor withholds ANY diagnosis until all the relevant test results are in?”

                YES! That is an excellent way to put it. If I could go back in time, I would replace my “wait for test results” comment with that. Premature diagnoses of the other conditions may have resulted in intrusive tests and medications with much more serious risks/side effects than the one I take. Always an excellent thing to keep in mind.

                “Well, again this will be individualized, but one way is as I described – trying to gently dissuade someone who has no particularly alarming symptoms or no other indicators of anything serious, no relevant medical or family history, no other recent changes, from pursuing extensive testing for fairly unalarming, common symptoms. ”

                I have no problem with this, in fact IMO it is what I would like from a HCP, as long as the doctor has an open unrushed discussion with the patient and understands that the news that a painful or difficult condition is not easily treated (if that is the case) may be disappointing or upsetting for the patient…not to the extent that the patient should be rude or threatening of course.

                “But if the person has a lot of emotional energy or self-identity invested in “being sick” and “being treated for a medical problem” per se, the idea of therapy is not going to interest them much.”

                My main problem with this is that it is a subjective judgment whether the patient is overly invested in being sick. Doctors or therapist judgment can be swayed by their own bias.

                I have an example. A women in the UCTD/Lupus group was posting about a struggle she was having with a new doctor and therapist. She had been through some very hard times going between a psychiatrist/internist with psychiatric and physical complaints. Initially the diagnoses was fibromyalgia + psychiatric disorder. But after the psychiatrist insisted on more testing of organic disease and she was hospitalized for pleurisy a couple time she was sent to A Rhuem in London who made a diagnoses of borderline SLE with plaquinil prescription and occasional steroid burst for pleuritic flares.

                She said she was doing really well. But then she was switched to a different rheum and a therapists. The new doctor focused on the initial diagnoses of fibro and psychiatric disease and wanted to take her off the medications and replace them with anti-depressants. Her therapist thought she was being very emotional and that the reason she was upset about the medication changes was that she was too “invested” in the diagnoses of SLE. As far as I could see it was logical to be invested in maintaining the medical approach that worked for her. I mean-SSRI don’t do a thing for auto-immune pleurisy and I hear it’s painful. So who is supposed to analysis the level of investment when the patient is at odds with the doctor?

                Personally, I try not to look for the emotional expressive stuff, it’s too prone to bias interpretation. I look for actions that show evidence of a rational decision making process. You cover this in the rest of your comment with “But it’s virtually a law that if there’s some minor remedy that will probably help or at least reduce physical discomfort, like a simple painkiller, the chronic somatizer will hotly refuse, often claiming this treatment itself makes them sick, or is dangerous, or the doctor’s trying to kill them etc. I mean, many of these people will not so much as take an aspirin for a headache. Irony.”

                I completely agree that shows a level of dysfunction that is very likely, (at the very least) contributing to the problem.

                “One incredibly good indicator that a problem is psychological is that the person actively resists treatment that might actually help (whether psychotherapy or otherwise).”

                Well- I’m being picky, but I will specify actively resists treatment that has an acceptable side effect/risk profile. I’ve turned down SSRI for PMS symptoms because the side effects I had in the past were worse than my PMS symptoms and the SSRI acclamation period can be a drag. Somethings just aren’t worth the hassles. But I know that’s not what you mean.

                “I just like debating. ”

                Ha! Just so long as you understand that if you debate with me you will be subjected to overly long, anecdotal, error ridden emails. It’s how I roll.

              2. KayMarie says:

                I think being honest about where they are in the diagnostic process is better than never saying anything until after who knows how many tests.

                It is going to depend on how comfortable the doc and the patient are with uncertainty. So I could see other people who would rather not get any clue until later on in the process.

                I tend to want to know where the thought process is from the start, but that may be because I want to make sure I’m getting the right tests and right amount of tests for what is probably going on, or even if I really need testing.

              3. mouse says:

                KayMarie “I think being honest about where they are in the diagnostic process is better than never saying anything until after who knows how many tests.”

                “I tend to want to know where the thought process is from the start, but that may be because I want to make sure I’m getting the right tests and right amount of tests for what is probably going on, or even if I really need testing.”

                I completely agree with this. This is the kind of relationship I have with my children’s pediatricians (and specialists, my son has a congenital health condition) and it goes along way toward lowering any anxiety associated with the situation. (In our case.)

                But somehow I can’t seem to develop the same relationship with my primary doctors. I can not seem to foster a comfortable flow of information.

                I wouldn’t be surprised if it’s something I’m doing. Because of social anxiety I can be stilted in trigger social situations. But I don’t feel like I’m being that different with the pediatricians. Oh well.

              4. DW says:

                Hi mouse – I agree the reply button can be a little hard to keep track of on this blog. I have no idea where this will appear but hopefully you’ll see it. I think we agree that figuring out what is psychosomatic could be fiendishly difficult in some cases. I also realize that sometimes people with complicated medical histories end up acting in a way that can appear hypochondriacal if one doesn’t know everything they’ve been through – being demanding with doctors because they’ve had to learn to ask a lot of questions, or resisting particular treatments because of a reasoned assessment of what the effect will likely be based on prior experience.

                One difficulty with somatizers is that they often end up de facto having complicated medical histories, because they’ve also been through a lot, albeit some of it self-inflicted. They too learn a lot about their own bodies and often have encyclopedic knowledge of their own reactions to various types of medications, allergies and hypersensitivities etc. By then, doctors and families are often so entirely exhausted of listening to the endless litany of problems that do not have solutions that they start to dismiss even reasonable problems.

                Colloquially this is known as “crying wolf” …

              5. mouse says:

                @DW – I can’t disagree with that, :) but just want say that I’m glad we had this discussion. It has been helpful in clarifying some thoughts I’ve been mulling over and provoked new thoughts as well.

                cheers!

  13. whoa says:

    [Mainstream medicine might seem to know a lot about health and illness (it certainly promotes itself as having an excellent understanding), but the sad truth is that most diseases and disorders are understood poorly or not at all.

    Really? Which diseases and disorders?]

    Cancer, multiple sclerosis, Alzheimer’s disease, rheumatoid arthritis, heart disease, Parkinson’s disease, allergies in general, and many more.

    Just because there is some knowledge about how a disease operates does not mean the disease is understood. And if I can’t be cured, then I would say it is not well understood.

    Some types of infectious diseases are well enough understood to be curable.

    And I don’t want to get into a long debate about whether cancer is curable. Very often it is not.

    1. Windriven says:

      “[T]he sad truth is that most diseases and disorders are understood poorly or not at all.”

      You know whoa, you are the most simple-minded commenter we’ve had here in quite some time. Your latest comment says: medicine doesn’t know everything about every disease. Well no screaming shit. But to suggest that most diseases and disorders are understood poorly or not at all takes a special kind of stupid; world class slack-jawed rubeness really. You apparently have a remarkably shallow appreciation of “most diseases and disorders.”

      1. whoa says:

        Oh Windriven, my comment seems to have driven you right over the edge. Maybe some anti-psychotics would help?

        1. Chris says:

          Good on you for making broad mushy claims that really have little to do with the subject of the article. When there is an obvious reaction to it you go into unsupported assertions.

          Let us look at one of your examples of something not well known: heart disease. Can you be a bit more specific? Do you mean problems with the heart valves, electrical function, artery blockage, hypertension, physical anomalies like extra chambers, thickened/thinned walls, or misplaced “plumbing”, etc?

          If you are going to complain about how little mainstream medicine know about health, you might try learning just a bit more about the subject yourself.

        2. Windriven says:

          Hardly, whoa. You don’t have the intellectual prowess to drive me to the 7-11.

        3. WilliamLawrenceUtridge says:

          Oh Windriven, my comment seems to have driven you right over the edge. Maybe some anti-psychotics would help?

          No, he’s always like that. Don’t get a big rubbery one because you got insulted by Windriven, it’s pretty easy to provoke. Just say something stupid.

          1. Windriven says:

            “No, he’s always like that.”

            Pedantically speaking William, that doesn’t mean anti-psychotics wouldn’t help. ;-)

            1. WilliamLawrenceUtridge says:

              And as a pedant, speaking without pedantry just isn’t worth it :)

    2. Harriet Hall says:

      “Mainstream medicine might seem to know a lot about health and illness (it certainly promotes itself as having an excellent understanding), but the sad truth is that most diseases and disorders are understood poorly or not at all.”

      Science-based medicine understands a whole heck of a lot more about the diseases that have been shown to exist than any other system of medicine does. And when it has not even been established that a disease exists, it’s hardly fair to blame doctors for not understanding it. It might be a real entity with an understandable cause; but then it might be just another myth like an imbalance of the four humors or neurasthenia or railway spine or the wandering uterus. First things first: establish that the condition exists as a reliably diagnosable entity and that symptoms are actually provoked by environmental exposures.

    3. WilliamLawrenceUtridge says:

      Cancer is caused by genetic derangements leading to undifferentiated cellular division. MS is caused by the myelin sheath beings stripped from nerves. Alzheimer’s disease is caused by the accumulation of plaques and tangles within the brain. RA is an autoimmune condition. Heart disease is caused by lifelong damage to the vascular system and eventually blood clots destroying heart muscle. Parkinson’s disease I’m not sure about. So we know what causes these diseases. We may not know the exact molecular pathways in detail, but so what? Are you using science’s imperfect knowledge of these diseases to claim that therefore CAM works? This is a false dilemma – if our knowledge of real diseases is limited, that’s totally independent of whether or not CAM works. In fact – CAM is far, far worse off because not only is there not good evidence it works, if any CAM modality actually works, we know even less about it than we do about real diseases and treatments because the intervention is considered so improbable and contrary to current science that it’s not even worth investigating. So you’re actually undercutting your own point, thanks very much.

      Just because there is some knowledge about how a disease operates does not mean the disease is understood. And if I can’t be cured, then I would say it is not well understood.

      Just because we can’t cure all diseases doesn’t mean you can fill in the gaps with whatever fairy tale most appeals to you. Just because modern medicine can’t cure all disease doesn’t mean CAM works.

      And I don’t want to get into a long debate about whether cancer is curable. Very often it is not.

      Sure, but so what? Cancer, which isn’t one disease but a myriad of diseases united solely by two factors (deranged genes and undifferentiated division). Some can be cured reliably and easily. Some can simply be cut out. Some are indolent and no threat to most. Some are fast, brutal, painful killers. They differ according to originating tissue and specific mutations. So one will never be able to “cure” cancer, one will make progress in the treatment of individual cancer types.

      But that doesn’t mean chronic Lyme disease exists, or that fibromyalgia can be cured by cold medicine, or that chronic fatigue syndrome has a viral etiology. The thing is – with the diseases that are known to exist, there is proof, evidence, convergent findings and basic biological work that supports their existence, causes and treatments. The vague diagnoses that you seem to be asserting exist and apparently are undertreated (or perhaps misdiagnosed? You’re not very clear) are often wastebasket diagnoses that are identified solely by subjective symptoms that are often highly modulated by mood and cognitive factors (fatigue, confusion, poor sleep, pain and nausea are all symptoms that are highly nonspecific and often the uniting symptoms of a variety of poorly-understood syndromes).

      Anyway, make your point more clearly if you have one because all you’ve really said is the trivially true point that medicine and science doesn’t know everything. Well duh.

    4. Andrey Pavlov says:

      And if I can’t be cured, then I would say it is not well understood.

      Hmmm….. now that seems like a silly way to think about things. By that logic, the fact that we have not yet landed a person on Mars is because getting there is not well understood. Or like saying that the reason we haven’t been able to get a probe to provide us data from the center of the sun is because we don’t understand how to get a probe to the sun.

      We can have perfect knowledge of a disease and still not be able to do anything about it. The tools may not exist yet.

      But then again, you seem to have a very wrong understanding of the state of knowledge of things. Perhaps to you:

      Cancer, multiple sclerosis, Alzheimer’s disease, rheumatoid arthritis, heart disease, Parkinson’s disease, allergies in general, and many more.

      are disease not well understood. But not to medical science. We know those diseases extremely well. Down to molecular interactions causing them, to being able to detect the likelihood of some of those diseases by your DNA, to being able to implant devices inside of brains to help fix the problem.

      You think we don’t understand Parkinson’s very well? We know it is a selective apoptosis of neurons in the substantia nigra, specifically the pars compacta. This part of the brain which interacts in a rather complex way with the basal ganglia to govern motion. It is a favorite neuroanatomy board question for all medical students because the triangular interactions of inhibiting inhibition creating positive motion output is a bit tricky to wrap one’s head around. So med students struggle with it. So medical boards ask the question.

      But I digress. We have drugs to help make up for the lack of dopamine produced by the depleted substantia nigra pars compacta. This help support the basal ganglia system and thus stops the symptoms of Parkinson’s. We also have deep brain stimulators that are implantable probes to mechanically take over the function of the damaged substantia.

      We know that the cause is very likely genetic and that it has to do with a protein deregulation causes fatal cascades in those cells over time. In fact I actually judge a regional science fair every year and a high school student had devised a custom made genomic knockout Drosophila model of Parkinson’s and showed that a specific protein was highly implicated in the development of the disease using immunofluorescence assays. I was very impressed as my own post-grad research was using Drosophila as a model species.

      So we know the disease pretty well. We’ve developed a few very clever treatments for it. We don’t yet know precisely why the cells are dying, but we know it is a genetically inherited protein dysregulation issue. We are currently identifying these interactions and we’ve made some good headway. But, believe it or not, this sort of work is hard. I’ve done it. And it takes skill and rigor and deep knowledge. You can’t just pick up a “how to” sheet and start doing complicated stuff like that.

      And once we figure out exactly the pathway leading to the cell death, we can start working on a cure. It would take the form of some sort of rationally designed recombinant DNA protein product. Or it could take the form of a cleverly designed retrovirus that would infect the cells and replace the faulty DNA with good DNA.

      Did you know we can do that, woah? Because that makes me say woah! We actually do it right now to cure some cancers. In fact I once peer reviewed a paper that was on modifying the glycopeptide coating of it to specifically bind to a certain type of leukemia cell and infect it with a killer DNA code. We’ve also cured a case of cystic fibrosis using the same technology to replace the defective CFTR gene with a functional one.

      Which is another really cool story about cystic fibrosis. It was once said that “salty babies die.” Well, it was true! Kids with cystic fibrosis have saltier sweat than normal. That is because the chloride channel protein is defunct. And that means water transport can’t work so well. Which makes mucous really think (hence the lung problems). And the sweat really salty. Well, to figure that out first we had to invent the field of molecular biology. Then we had to isolate proteins from cells and characterize their function and the structure. Then figure out that the broken one looks a certain way. Then we found the DNA that corresponds to it. And it turns out there are thousands of mutations that lead to CF. Hence the differing severity of the presentations. But the delta-F508 mutation is the most common. Then we developed the technology to create custom DNA strands and put them into viruses and infect the cells to replace their DNA with functional DNA.

      And that is just barely scratching the surface of it. There are entire libraries devoted to the knowledge we have about diseases and the human body. That’s why we go to school for so long to be doctors.

      I’d say that we know a fair danged lot about all those diseases you mentioned and plenty more too.

      1. Harriet Hall says:

        And we have a good enough track record of learning about those diseases that when we are unable to pin down something like MCS, although it’s possible that we are missing something, it’s equally possible that there is no such disease as currently conceived, that MCS is an ill-defined melange of non-specific symptoms due not to chemical sensitivity, but probably to a variety of causes, some of which are likely psychological ones.

        1. whoa says:

          Oh yes Harriet, when you can’t figure out what is wrong with your patients, they must be hallucinating. It can’t possibly be your ignorance.

          1. Harriet Hall says:

            Do you have problems with reading comprehension? I have never even remotely suggested those patients might be hallucinating, and I clearly stated the possibility that we might be missing something. Symptoms are real; interpretations of what those symptoms mean may not be. Ignorance is slapping an incorrect label on a suffering patient and treating them inappropriately.

          2. WilliamLawrenceUtridge says:

            Oh yes Harriet, when you can’t figure out what is wrong with your patients, they must be hallucinating. It can’t possibly be your ignorance.

            No, the problem is generally the ignorance of the patient. Ignorance of the scientific method. Ignorance of how deceptive the mind can be. Ignorance of how their own bodies function. Ignorance of basic biochemistry. Ignorance of how causality can be misattributed. Ignorance of how quickly the body can recover spontaneously. Ignorance of they will tend to seek out their doctors when symptoms were at their worst, and thus most likely to get better. Ignorance of how the mind can create symptoms in both body and mind.

      2. whoa says:

        “And once we figure out exactly the pathway leading to the cell death, we can start working on a cure.”

        I don’t think I will hold my breath for that.

        1. MadisonMD says:

          And you have a better way of finding a cure more expeditiously? Say you look at some entrails and discern that tincture of moon beams cure PD? Or do you ascribe to some other mythological framework?

        2. Andrey Pavlov says:

          I don’t think I will hold my breath for that.

          Well, I wouldn’t hold my breath either. Remember how I said doing this stuff is hard? Yeah, that means it will take a while.

          What would you rather do in the meantime? Make shit up and do whatever willy nilly pleases you because the current state of technological sophistication and understanding is lower than you’d personally like it*?

          Well, guess what? We feel exactly the same way! That’s kind of the point – if we felt otherwise we’d just sit around twiddling our thumbs thinking we are done. But we aren’t. And we never will. So your completely vacuous and thought-free sentiment can be uttered by anyone at any point for the rest of humanity’s future.

          The difference is that we here actually do something about it rather than whine like an uneducated petulant child who just thinks that the universe should respond to his wishes (and woefully inadequate understanding of it).

          *Nevermind the fact that you have clearly shown us that you don’t even have the foggiest clue of what the actual state of tech and understanding is to begin with.

          1. Sawyer says:

            What would you rather do in the meantime? Make shit up and do whatever willy nilly pleases you because the current state of technological sophistication and understanding is lower than you’d personally like it*?

            This is a concept that I have NEVER seen successfully communicated to those in whoa’s camp. They don’t seem to grasp that our current approach to medicine, messy as it is, would be a hundred times worse with less stringent standards of evidence.

            Arguments for changing these standards usually boil down to the lottery fallacy. Point to the handful of diseases that doctors were historically too slow to recognize; completely ignore the hundreds of bogus diagnoses that were systematically eliminated before they ever got a foothold. How do we know which category MCS fits into without rigorous standards? If you want to endorse a more flexible approach to identifying mystery diseases, you’re going to get a dozen completely bogus ailments for every real one. And in an age where we are finally coming to terms with the personal and economic consequences of overtreatment, it should be very obvious why this would be a really bad idea. Don’t get me started on how long it takes to expunge incorrect ideas from the scientific literature.

            Again, I have no clue how to actually demonstrate this to people that aren’t already engrossed in the process of scientific research. Most of the world hears far too much about all the grand discoveries in medicine without ever learning about the mountains of notebooks filled with failed hypotheses.

    5. DW says:

      The thing is, people with medically unexplained symptoms so often seem to want it both ways. Their battle cry is “Doctors don’t know everything,” yet they just will not give up demanding doctors help them. If doctors are so ignorant, and really know very little about most conditions and when they run tests they often miss the most common medical problems … then why is it these are the same people who spend their lives running from doctor to doctor?

  14. whoa says:

    No, I have not said that mainstream science and medicine don’t know everything. I said that they understand very little.

    1. weing says:

      “No, I have not said that mainstream science and medicine don’t know everything. I said that they understand very little.”
      What’s the difference? From what can and eventually will be known, we understand very little. From what we knew 100 years ago, we know and understand a lot more. As Dr. Hall indicated our knowledge is operational. Is it possible you are a disciple of essentialism?

    2. Chris says:

      “I said that they understand very little.”

      Compared to what or who? How much do you understand? What would be a better system? And how would you know it would be better?

      And what does your opinion have to do with multiple chemical sensitivity?

    3. Windriven says:

      “No, I have not said that mainstream science and medicine don’t know everything. I said that they understand very little.”

      On what basis do you make this claim? What simple-minded scale do you use to measure? Humiliate me, whoa. Demonstrate your impressive intellect by mounting a meaningful response.

      Or more likely, humiliate yourself with more vague, meaningless prattle.

      1. whoa says:

        It is worth going to a mainstream medical doctor if you have something that requires surgery, such as appendicitis, or if you have an infection that requires antibiotics. Or if you need blood tests, imaging tests, etc. Or if you need insulin for type 1 diabetes.

        I might have forgotten something, but I think that covers most of it. For just about everything else, you will not get help.

        1. Harriet Hall says:

          “I think that covers most of it”

          I think that demonstrates your ignorance and bias.

        2. MadisonMD says:

          So you don’t think it worthwhile to cure pediatric ALL, to treat heart disease, to prevent stroke, to prevent complications of DM2, to treat asthma, rheumatoid arthritis, inflammatory bowel disease, CML, cardiac arrhythmia, Still’ s disease, pancreatitis, hepatitis, HIV, ITP, sickle cell disease, hemophilia, thyrotoxicosis, hyperparathyroidism, hemorrhage, vasculitis, etc etc etc.

          Clearly you have thought this through after painstaking research, whoa. Nice job. ;)

        3. Andrey Pavlov says:

          I might have forgotten something, but I think that covers most of it. For just about everything else, you will not get help.

          Which very, very clearly shows two things. Firstly that you don’t have even the slightest clue of what you are bloviating about and secondly that you have an ideological axe to grind.

          Put down the axe and pretend like you might possibly could be wrong. Then take some time to learn what we actually do know and how the process works. And, if after you’ve done that, you still find that axe, go ahead and pick it up and start swinging. The difference is that if you actually care about learning and doing things right, you’ll finally start swinging that axe in the right direction.

        4. WilliamLawrenceUtridge says:

          I love how whoa drops just enough information to offend without ever saying anything substantive that could be shown to be factually accurate. Who needs facts when you’ve got that much bias?

        5. weing says:

          “Or if you need blood tests, imaging tests, etc. ”
          Why would you need blood tests, imaging tests, etc? Do you decide these things and the doctor is just there to enable you to get unnecessary blood and imaging tests?

          1. DW says:

            And what would a person want blood tests and imaging for, if the doctor is incompetent to interpret the tests?

    4. KayMarie says:

      And which version of woo do you propose actually has the understanding of everything?

      Yes many of them have very complex explanations of things and can tell you with certainty your Qi is windy in your liver, but is that actual understanding or just having a big enough framework you can find a way to stuff any symptom into it with certainty (and a different person in the same world view may stuff your symptom in your Qi deficient spleen with a different set of treatments for that)

  15. whoa says:

    “MCS is an ill-defined melange of non-specific symptoms due not to chemical sensitivity, but probably to a variety of causes, some of which are likely psychological ones.”

    I love that, Harriet. When people have unexplained physical symptoms, you say it’s probably psychological. When they have psychological symptoms, you say the cause is probably physical.

    What fun! Thinking in complete circles.

    1. Harriet Hall says:

      Thinking in circles? Not me.

      Please try to read what I actually wrote rather than what you want to imagine I wrote. I did not say “when people have unexplained physical symptoms, it’s probably psychological.”

      When a mixed bag of unexplained symptoms are said to be due to a new medical diagnosis (like MCS) and the evidence for that diagnosis doesn’t add up, we question it. When patients have unexplained symptoms, we look for a physical cause. When we don’t find a physical cause for the patient’s symptoms and when we have ruled out everything reasonable to rule out and we can conclude (based on current evidence-based medical knowledge) that the symptoms are not due to any known life-threatening disease, we try to help the patient cope with those symptoms. When patients have psychological symptoms, we recognize that they ultimately have physical causes at the most basic level (because the “psyche” is an emergent epiphenomenon of chemical and electrical processes in the brain), and that they can also have psychological causes at a higher level where thoughts and experiences influence brain processes. And we know that psychological symptoms can respond to both medical and psychological interventions.

      1. whoa says:

        “because the “psyche” is an emergent epiphenomenon of chemical and electrical processes in the brain”

        You know that Harriet, you know what the psyche is. You have all the great mysteries figured out. No wonder your mind is slammed shut.

        1. WilliamLawrenceUtridge says:

          That’s quite the strawman you’ve built up there. And an amusing one coming from somebody who claims such certainty in the absence of anything resembling proof.

          Look, you’ve got a chip on your shoulder, you don’t like real medicine. That’s great, but nobody here cares and you offer no useful solutions, merely vague criticisms. What do you want, attention, like a child? Well good job kiddo!

          Say something of substance or go away.

        2. Harriet Hall says:

          ““because the “psyche” is an emergent epiphenomenon of chemical and electrical processes in the brain”
          You know that Harriet, you know what the psyche is. You have all the great mysteries figured out. No wonder your mind is slammed shut.”

          I do not claim to “know” that I have figured out the mystery of the pscyhe. As all scientists and critical thinkers do, I have formed a provisional conclusion based on the best available scientific evidence. My mind is open enough to consider credible evidence to the contrary: do you have any such evidence?

    2. Chris says:

      “When people have unexplained physical symptoms, you say it’s probably psychological.”

      Like when my fourteen year old son suddenly just slowed down. He would not, actually could not run during soccer practice. He complained that his left arm hurt, but we all assumed it was from an earlier fall on to it.

      Then he went to the doctor for a routine check up, including a tetanus booster, and it turned out he had a heart murmur. He got scheduled for a echocardiogram on a Friday morning before soccer practice. At lunch on Friday after the test, the doctor called and said he should not go to soccer practice.

      It turns out he was diagnosed with obstructive hypertrophic cardiomyopathy. He had surgery for it nine years later, and is still on medication.

      This is why I pulled out “heart disease” from your list of things that are “poorly understood.” Just like cancer it is not one disease with one cause, nor does it always present itself dramatically.

      Now, exactly how do propose to make things better? What is your solution? Why are your opinions better than those have gone to medical school, done medical research or even this parent who has spent a Wednesday morning with other families at the Mayo Clinic while our loved ones were in surgery?

      1. whoa says:

        “Now, exactly how do propose to make things better? What is your solution?”

        First of all, your example is not relevant to my statement. I said that some things can be cured by surgery.

        By “heart disease” I meant the most common form of heart disease, caused by blocked arteries.

        How do I plan to fix everything and cure all diseases? Well I didn’t know that I had volunteered for that.

        1. WilliamLawrenceUtridge says:

          Whoah there boy, you’re moving the goalposts too fast, they can’t handle the strain!

        2. Chris says:

          “By “heart disease” I meant the most common form of heart disease, caused by blocked arteries”

          Are you sure about that? HCM is actually the most common cause of sudden death among young athletes (others include Long QT, .Marfan’s Syndrome), and occurs at about one out of five hundred in the population. “Blocked arteries” is often a condition of old age, unless there is a genetic form.

          I mentioned it because the symptoms started out like looking like some kind of chronic fatigue. Being tired occurs when the extra heart muscle partially blocks the aortic valve (and when it fully blocks it, sudden death). Plus it was a in a list of things you jammed together, like cancer (oh, and fatigue and clouded thinking is also a symptom of leukemia).

          Actually, you are showing us over and over again that you have limited reading comprehension and really do not understand any subject. So stop the generalities, and address the actual points that are in the above article. Perhaps you should have someone help you read it.

        3. Windriven says:

          “How do I plan to fix everything and cure all diseases? Well I didn’t know that I had volunteered for that.”

          What a horse’s ass. You are admitting that you have nothing positive to bring, only your whiny complaints and vacuous proclamations.

  16. Laura says:

    It’s possible to have allergies that don’t appear in the standard skin and blood allergy tests. In the nose, this is called “local allergic rhinitis”. See http://www.jiaci.org/issues/vol20issue5/cme.pdf
    So the mold sensitivities mentioned above may be due to mold allergies, which may or may not show up in standard allergy testing. Good allergists realize that allergies don’t necessarily show up on their allergy tests. There are both false negatives and false positives.
    It’s possible to do allergy testing in the nose for local allergic rhinitis, but this isn’t done outside of a research setting so far as I know.
    It’s also possible to have delayed-reaction food allergies which don’t show up in standard tests for food allergy. There’s a good review article at http://www.ncbi.nlm.nih.gov/pubmed/24533607 This article is about research on non-celiac wheat sensitivity, but they have found that a subset of people with NCWS have hypersensitivities to foods that don’t contain gluten as well.
    I’ve looked at a lot of research articles from various researchers to try to find out what might be going on with delayed-reaction food allergies. Here are a few things I found:
    - This kind of food allergy is more likely with people who have other kinds of allergies, such as allergic rhinitis or allergic dermatitis.
    - It (at least sometimes) involves eosinophilia in the small intestine.
    - The symptoms may be decreased by allergy medications such as the mast cell stabilizer cromolyn, H1 and H2 antihistamines, Singulair.
    - After eliminating the food, people typically become more sensitive and may have a reaction to a few milligrams.

  17. autistic-adult says:

    Quick question, because I’m stupid: what differentiates something like fibromyalgia from these “fake diseases”?

    1. Harriet Hall says:

      Quick answer: not much.

      1. Sawyer says:

        Between the constant acupuncture-for-pain debates, fibromyalgia diagnostics, arthritis treatments, and general discussions about Tylenol and Aspririn, I think Science Based Medicine would benefit tremendously from having a few articles written by a professional rheumatologist. I have zero knowledge about this field and can’t offer any recommendations, but it seems like something worth looking into. Especially considering there is no shortage of HORRIBLE doctors in this field that don’t have any qualms about giving their advice out to strangers.

        I know you guys are not busy at all so this should be easy to accomplish. :)

        1. mouse says:

          Second that – Articles from a Rheumatologist would be great!

        2. mouse says:

          Although I’d like to add, don’t get my rheumatologist to write it, because he seems to shrug alot and say “I don’t know”, which is okay during an office visit (if needed) but lacks pizzaz in a blog article.

          I just had to add something about MCS that was niggling at the back of my brain and the topic of rheumatology brought it back.

          A while back I read a book “If You Have to Wear and Ugly Dress Learn to Accessorize.”* Written by a woman who has systemic lupus erythematosus and one who has scleroderma, which are both auto-immune connective tissue diseases. Linda McNamara, was ill for years before her diagnoses of SLE. At one point, before her accurate diagnoses, she was diagnosed with MCS.

          Also – I was reading an article on testing for connective tissue diseases on Saturday (because that’s what I do for kicks) and I remember it said that patient with connective tissue diseases often experience multiple visits and unneeded delays before being referred to a rheumatologist for appropriate testing. Couldn’t find that article again, but here’s another quote.

          “SLE is frequently overlooked; patients spend an average of 4 years and see three physicians before the disease is correctly diagnosed. Part of the problem is that presentations of the disease vary so widely between patients and that signs and symptoms evolve over time. Often, physicians do not consider SLE in the differential diagnosis.”**

          The problem is that the testing that is available tends to have difficulty with false positive and negatives, so the rheumatologist rely on criteria – something like 4 out of 10 signs and symptoms. These signs and symptoms often develop over time, not all at once.

          As an aside – because these disease can effect the nervous system, patients can experience odd sensory and psychiatric symptoms in addition to the symptoms that are more concretely tied to the connective tissue.

          On the other hand, over diagnoses of these diseases is a problem too, sometimes people end up on powerful medications that they didn’t need or another diagnoses is missed. As Harriet Hall said up thread it’s important to “keep an open mind and re-evaluate the situation if new symptoms developed or anything changed.”

          *http://www.amazon.com/Have-Wear-Dress-Learn-Accessorize/dp/1604945958

          **http://www.ccjm.org/content/76/2/137.long

          But here’s an article on connective tissue disease testing that shows the complexity. http://www.the-rheumatologist.org/details/article/873239/Know_Your_Labs.html

      2. whoa says:

        Big surprise, Harriet thinks fibromyalgia patients are hypochondriacs.

        I feel so sorry for her patients, who are accused of somehow imagining their own terrible suffering.

        1. Harriet Hall says:

          “Harriet thinks fibromyalgia patients are hypochondriacs.”

          Bullshit! I never said any such thing! Go back to first grade and learn how to read!

          1. Harriet Hall says:

            I apologize for the profanity. It really angers me to be criticized for saying things I never said.

        2. WilliamLawrenceUtridge says:

          Dr. Hall has no patients, she is retired.

          And for someone who is so averse to having words put in their mouth, you sure are quick to stuff a dictionary into Dr. Hall’s. Hypocrite.

        3. MadisonMD says:

          Anyone notice the similarity of posts by whoa and hank banned troll nickerson? Whoa is slightly toned down, but keeps going after Harriet, argues any irrelevant point, posts content-free assertions, and ignores responses that clearly refute these assertions. Also the statement to Chris that he meant the most common form of heart disease, not HOCM, is identical. Is this a coincidence?

          1. Chris says:

            It is close, Nickerson made a claim that a certain diet could cure heart disease, but finally backed down by saying “Oh, I did not mean congenital heart disease!” Then he went on the call some of the MDs murderers.

            “Whoa” is probably one of those whose scientific knowledge is a full inch deep and not even a centimeter wide. Though he is quick to accuse Dr. Hall of saying something she never even implied. His broad mushy statements and quick accusations seem fairly troll like.

        4. Missmolly says:

          Jeez it’s depressing when a self-described ‘open-minded’ person like whoa can’t contemplate the idea that physical symptoms can be compounded (or indeed produced) by psychological distress.
          Saying symptoms have a psychological component doesn’t mean the sufferer is ‘making them up’, ‘faking it’ or that ‘it’s all in your head’. The suffering is real, regardless of whether there is an ongoing physiological trigger- as Dr Hall clearly expresses in her management rubric in the thread above.
          We all experience this- who doesn’t struggle worse with a cold or with ‘regular’ aches and pains when they are feeling stressed out or emotionally blue? Who hasn’t felt ‘literally’ sick with worry at some time in their life? Is it so hard to see that ongoing psychological distress without effective relief might create a physical expression?
          It’s people like whoa who insist on (and perpetually investigate inappropriately for) a purely physiological reason for every symptom in the face of evidence, who really stigmatise those using their own psychological resources to actually get well.
          Open-minded, my arse.

          1. simba says:

            IMO it stigmatises both psychogenic illness and mental illness further. “I’m not one of those crazy people, I have a REAL (i.e. physical) problem.”

            Because those people’s suffering isn’t real. Unless you have a signed stamped cert from your naturopath saying you have whateveritis, you’re just ‘a crazy person’. And ‘crazy people’ can just think themselves out of it, cheer up, get over it, stop moping or being in pain or being afraid because ‘it’s all in your head’ suddenly means ‘you can change it through willpower/you decided to be like this/your problems are less ‘real’.’

            And then the people who think like this are unable to see that others don’t. So to them, saying that an illness/pain is psychogenic is heartless and dismissive, because they project their own callousness onto others.

            “Imagining their own terrible suffering” means ‘she thinks they’re hypochondriacs/not really suffering!’. The subtext seems to be ‘because I would, if they didn’t have a physical cause for it.’

            Suffering is suffering. Pain is pain whether it’s caused by a cut or an emotion- it feels the same to the person. Heck, I’d rather have an injury but be happy and in a position to cope with it, than the regular aches and pains as felt when under a lot of stress.

          2. DW says:

            I think the bottom line is the understandable wish for a magical cure to make pain go away. When one is suffering, one wants to be told, “I know what the problem is. Here’s the cure. Take this, and I promise in a few days you’ll feel better.”

            When one is instead told, “I don’t know what’s wrong. Medical testing doesn’t indicate that you have anything that medicine has a ready cure for. One possibility is that your problem is psychogenic in origin; you might consider consulting a psychologist/psychiatrist,” the immediate reaction of many people is despair, which is naturally followed by anger. This answer means that no immediate relief is forthcoming. The person is being told they might have to undergo a long and arduous process – psychotherapy – to effect even a small change in the physical expression that they are experiencing which is causing so much trouble. So it’s understandable, really, that almost no one wants to hear this. It is much more comforting to imagine that really if just ONE MORE TEST is run, perhaps a simple answer – swallow this pill; come back next week for a procedure etc. – will fix things. And if this doctor won’t do one more test, let’s go find another doctor who will – ‘cus you know there is ALWAYS a doctor out there that will agree to run another series of tests, no matter how clinically dubious the indication. These doctors are also known as “quacks.”

            Psychotherapy will virtually never fix things quickly and the outcome is always iffy. This is hardly the MD’s fault, but the MD takes the brunt of the person’s anger.

          3. whoa says:

            Stress can make physical symptoms worse. But agonizing pain and sickness are not created by the mind.

            It is normal to not believe someone who claims to be suffering but has no diagnosis. But although it may be normal, it is cruel and ignorant. Only people with blind faith in mainstream medicine are likely to do that. People like Dr. Hall.

            1. KayMarie says:

              I don’t know any doctors who claim all suffering is completely made up when we don’t have a specific medical test for that specific thing. Sure you get some jerks in any profession, but a lot of what I see going on is also on how the patient’s beliefs about their body effect how they hear what the doctor says.

              I think most people are unaware of how much suffering “normal on the medical tests” can cause. Especially those who aren’t medical professionals or people who have lived through one of these conditions before.

              Dr. Hall mentioned functional disorders elsewhere. Most lay people hear functional and believe what they heard is “I am making this up”. No, but what is broken is not something easily seen on a medical tests for other conditions and can cause immense suffering. You don’t need a broken arm to have severe arm pain.

              I read one description of functional illness that I liked and makes sense to me (having one of the common ones). The body part can do all the things it always has in the past, but from some injury or process is no longer getting the information it needs to do all the functions it always has in the right order, at the right intensity, or at the right time. It does the best it can, but being out of sync it does things in a way that causes symptoms. None of this says it is in your head, or you made it up, or your suffering is mild and inconsequential.

              Now some of it does show up in brain scans for some things because it is sending the wrong signals (or sending them up to the brain at all) in the wrong order, at the wrong time, or it is shouting pain when it should be saying gentle touch. The brain also does the best it can with this input that it should not be getting. FWIW it seems the default is to feel it as pain when it isn’t an expected input.

            2. Harriet Hall says:

              I have made it clear that I DO believe those people and that I DO NOT have a blind faith in anything. Please stop misinterpreting everything I say and maligning me. If you can’t comprehend what I write, you shouldn’t try to comment. It is you who are being cruel and ignorant, not I.

              By the way, pain is not created by the mind, but suffering is. The mind receives the pain signals, interprets their meaning, and can either minimize or magnify their impact.

              1. Windriven says:

                Dr. Hall, whoa is not misinterpreting anything, she is clearly intentionally misrepresenting what you say.

                I’m tending to agree with Madison that whoa is Hank Nickerson in a cheap suit: same scumbag, just slightly less repulsive.

            3. Windriven says:

              “But agonizing pain and sickness are not created by the mind. ”

              Sadly, sometimes they are. Perhaps not all that often. But often enough.

              “But although it may be normal, it is cruel and ignorant… People like Dr. Hall.”

              Fuck you, whoa. In the eye with a dull spoon. You don’t know much about medicine as it is actually practiced and you don’t know anything about Dr. Hall. That sort of ad hominem is beyond the pale.

            4. WilliamLawrenceUtridge says:

              But agonizing pain and sickness are not created by the mind.

              What’s phantom limb syndrome then?

              It is normal to not believe someone who claims to be suffering but has no diagnosis. But although it may be normal, it is cruel and ignorant. Only people with blind faith in mainstream medicine are likely to do that. People like Dr. Hall.

              Once again you are putting words in Dr. Hall’s mouth. Dr. Hall saying “I don’t know what’s wrong with you” or admitting that there may be psychogenic components in a blog comment isn’t the same thing as cruelly saying that someone without a diagnosis isn’t sick and suck it up, buttercup. That’s your projection onto what she has said, presumably because you are an asshole. Also,

              It is normal to not believe someone who claims to be suffering but has no diagnosis.

              Is suffering only legitimate if someone has a diagnosis? Dr. Hall has said repeatedly that even if there is no objective findings, the pain is still real and deserves to be taken seriously, but that includes exploring options, treatments and etiologies that are not purely physical. As I’ve said before – even if the symptoms are not purely psychological, a psychologist can help when someone is adjusting to new limitations. This isn’t cruel, it’s the reality that your doctor may simply not be able to diagnose you. Possibly because they are a bad doctor, possibly because you have something really weird, possibly because there’s nothing physically wrong with you.

            5. DW says:

              I haven’t seen a single person here suggest that sufferers of these maladies aren’t actually suffering.

            6. Missmolly says:

              Whoa, It is actually NOT AT ALL normal for a doctor to disbelieve patients who express that they are suffering. That’s why we have all just said explicitly, in this very thread, that we DO believe that these patients with psychogenic conditions ARE suffering. And we wish to help them in an efficacious way. Which for psychogenic conditions include psychological interventions.
              I am forced to agree with the majority that you, whoa, are an illiterate idiot with a prejudice against mental health.

              1. simba says:

                Hit the nail on the head, Missmolly. Mental health stigma is the root of this.

                It’s all about Whoa distancing himself from ‘those crazy people’ because only physical illness is REAL illness, according to him (“agonizing pain and sickness are not caused by the mind”).

                Only ‘REAL’ physical illness causes suffering, hence where he gets his bizarre claim that we don’t believe people ‘without a diagnosis’ are actually suffering. Because in his head, if we say there’s no physical diagnosis for someone’s illness we are apparently also saying there’s no suffering. What we’re saying is other things besides physical illness can cause actual/ ‘valid’ sickness, pain, and suffering.

                And only those with ‘REAL’ illness deserve compassion, according to Whoa. Everyone else can go rot.
                Again, he’s projecting his own lack of empathy on to others. Normal people care about suffering, illness, and pain, whether it has a physical or mental cause.

              2. Andrey Pavlov says:

                Mental health stigma is the root of this.

                It is truly sadly pervasive. I had a patient I just discharged a couple of days ago that one morning started getting worked up because she felt like her issues were now “just in her head” since we had worked at addressing the physical root of them so well. She was starting to put on the “brave face” sort of attitude and begin to think about going home without the symptoms actually resolving. When I told her that I think her head is her and that it is always a combination of the two, and that being “in your head” doesn’t make anything less real it just means we address the problem in a different way, she broke down and started crying and thanked me. It was almost strange – like I had given her permission to accept that her mental anguish was actually real.

                She was extremely anxious and agitated so I gave her a little ativan and said we would give it one more day of treatment to get everything in order (which was reasonable medically as well as psychologically). The next day she felt much better and was excited to go home.

              3. DW says:

                I would like to say, though it may be unpopular, that it is a fact that negative personality traits often accompany chronic, long-term somatizing. There are patients whom doctors really have a hard time dealing with interpersonally, though it is impolitic to say so, and a persistent (decades, in many cases) somatizer is one of the worst. It is fine for us all to insist we feel compassion for these people but there’s no reason not to acknowledge some of them are darned hard to feel compassion for. There’s often a heavy component of self-pity, narcissism, neediness, attention craving, and manipulativess – sometimes combined with aggressiveness and/or legal threats.

                I am not talking about people who ask for more tests even when the doctor has said they have no more tests to offer (though I’m sure that is annoying, in itself, as it is likely wasting the doctor’s time). Many persistent somatizers really do take up inordinate amounts of time, calling many times a day, having long, pleading conversations, demanding repeated acknowledgment of their suffering, handing the doctor mountains of paper printouts from the Internet on unlikely diseases, and becoming angry if they perceive the doctor as “dismissive” of their suggestions, staging “scenes” in the office (refusing to leave, crying or screaming, etc.). “Compassion” is tough in some cases.

            7. Kultakutri says:

              “Agonizing pain and sickness are not created by mind.”

              Tell me more. I’m severely depressed and it does make me (and not only me, I hear) pretty sick, pains included – not agonizing, just annoying, though.

              But you will certainly respond that depression doesn’t have anything to do with mind or some such.

    2. Sawyer says:

      I think that is an excellent question that would merit it’s own post on this site. I’m confident that rheumatologists have come up with some sort of comprehensive diagnostic test for fibromyalgia, but I sure as heck don’t know what it is. I think a big difference is that scientists studying fibromyalgia have a zero-tolerance policy towards charlatans at this point, which is certainly NOT the case with MCS researchers. That still doesn’t answer the diagnosis problem though.

      I know several people here have praised the book Osler’s Web for it’s coverage of the Chronic Fatigue syndrome debates, so that might be a good starting point to learn about how to identify diseases with non-specific symptoms.

  18. Laura says:

    Scott Gavura is conflating multiple *chemical* sensitivity with allergies to proteins.
    People with MCS claim to be sensitive to very tiny amounts of chemicals, like formaldehyde, gasoline etc. That’s different and much more dubious than an allergy that doesn’t show up on the standard allergy tests.
    Scott Gavura should focus on MCS, rather than vaguely go on about many different kinds of hypersensitivities.
    I don’t know if people who are sensitive to perfumes would be considered to have MCS, because the quantities of chemicals in perfume aren’t tiny.
    There have been a couple double-blind studies of people who claimed to have MCS. They weren’t able to discriminate between air containing the chemical and air without it, when they were blind to which was which.
    So I think it’s likely people who have “MCS” actually have undiagnosed allergies of some sort, not to the chemicals they blame but to molds or maybe foods. Or some other problem.
    It seems like people like to blame chemicals. Formaldehyde sounds very ominous.
    However, the studies where people with “MCS” didn’t pass double-blind tests, don’t settle the question. There’s a “training effect” where people learn to experience a certain reaction after they’ve had it many times. So even when given a placebo, they might experience this reaction. The “training effect” works also with actual reactions. Also, the anxiety of being tested may make people anxious and make them experience a reaction.
    If someone with “MCS” inhaled a small amount of their culprit substance without knowing it, and DIDN’T have a reaction, that would be convincing that they aren’t really sensitive to it.
    What I would suggest to someone who claims “MCS” is that they test themselves in a blind fashion. This wouldn’t be hard, since the chemicals are in too tiny a quantity to be smelled. If they repeatedly test themselves and can’t discriminate between a tiny amount of a chemical and pure air, they have been fooling themselves about the chemical.

    1. Chris says:

      “Scott Gavura is conflating multiple *chemical* sensitivity with allergies to proteins.”

      Allergies are not always to proteins. I have a severe nickel allergy, which is definitely not a protein. It is very common among those who like to sew, which is why there are gold coated tapestry and hand quilting needles (I own some, along with the special Japanese non-nickel coated sewing needles).

      Also I used to get a rash when I gave blood from the iodine swab, an element that is quite close to nickel on the periodic table. It is apparently common enough the blood center no longer uses them. And when I wore contact lenses I found out I was allergic to the saline preserved with thimerosal (mercury), like most everyone else (the optometrist said it was causing cells from the surface of my eye to dye and flake off… they were weighted toric soft lenses due to my kind of astigmatism, giving them up was more of a relief than a burden).

      And yes, I have other allergies. I was tested when I was in college, and after spending what seemed forever being pricked, poked and made to sit while I reacted I learned that I have common pollen allergies like alder, willow, ragweed, horse and nicotine (tobacco). I am also one of those who is both a “super taster” and sensitive to alkaline enough that cilantro tastes like soap.

      If one goes by the just the words “multiple chemical sensitivity” for a definition, then I would match that. Fortunately I have learned how to live with my sensitivities and have no adverse health effects. Even though I did break out in a huge rash on both my feet and hands after contact with shiny silver covered boat hardware on a lake trip. I no longer wear jewelry, I am careful when buying sewing needles/pins, the blood center no longer uses iodine, and am very glad that publicity had noted that it is genetics and not my imagination that cilantro tastes like soap!

      1. Chris says:

        Sometimes I know how to spell homonyms, other times not:

        “surface of my eye to dye” is supposed to be “surface of my eye to die”

        I do like to dye fabric, and when I am done with a certain project I will dying lots of silk, being very very careful with the chemical reactive cold dyes (gloves! eye protection!).

        1. mouse says:

          Oye! I unofficially specialized in fiber arts in school. We used the powder form of fiber reactive dyes to mix for silk screening. Our teacher carefully instructed us to wear particles masks when mixing dyes, but sometimes I would forget or sometimes other people using the room were no careful about closing containers, cleaning up or would just do their mixing next to you without giving you a heads up. Some days you might blow your nose and get a rainbow.

          One night after spending the day completing my final silk screen project, I got home and felt unwell. After a while I started aching all over, particularly my big joints, shoulders, hips, knees, headache and I just felt awful, chills and hot. Sometime in early morning I started feeling better, although very tired. I called poison control, but they couldn’t say much beyond getting fresh air and preventing further exposure. Don’t know if it was the dyes or just a virus. Miserable thing, though.

          I’ve had similar (not as bad) reaction to being around spray clear coat and silicone glue fumes for a few hours. When I hear chemical sensitivities, this is what I think of (although, I see it’s not being used that way in this case). There are people who can be around these kinds of fumes and seem unaffected. They often seem to think one is being melodramatic when ones asks them to spray or glue under a hood or at a greater distance from the rest of the group. Then again, there are folks who may be overly cautious, but I suspect among fine artist/craftspeople, the under cautious may out number the over cautious. That may be confirmation bias, though. ;)

          1. Chris says:

            Chemical exposure is something that artists do need to be careful about. One thing about some poisons is that they actually started out as dyes and paint colors. Prussian Blue was literally hydrogen cyanide, the lovely red vermilion was from cinnabar (a mercury ore) and some lovely greens were arsenic.

            Deborah Blum’s book The Poisoner’s Handbook does mention the industrial dye industry in Germany that used what we now know are poisons. She mentions one case where one green painted room was so toxic with arsenic it killed the residents who slept in that room.

            When I helped the elementary school art teacher at her after school programs I was amazed at the warning labels on the bottles. And she was very serious about the safety when it came for the tie dying project.

            As an artistically untalented person in a family of artists, I have tried several forms to express myself. Seriously I can’t draw a straight line even with a straight edge! One of my attempts was stained glass. I had to learn about how to not breathe in lead dust when sanding the came, and also the fumes when soldering it together.

            Le sigh. Dear hubby had to help me draw a simple flower for my project. I ended up being able to repair leaded glass panels we bought at second hand stores. My only real successful artistic endeavors have been growing edibles in an ornamental garden (along with cooking them!) and sewing.

            Even though I mostly do organic gardening (I still use Roundup when the bindweed from my neighbor’s yard invades!), it still involves some nasty chemicals. I use lots of bone meal, and I don’t want to breathe it in. Lime sulfur is a certified “organic” pesticide, but it can be nasty. While it has helped me with pear rust, I naively killed an apricot tree because I did not read the warnings close enough. Read the labels! You’ll be amazed, like I was at the use warnings for the <a href="http://en.wikipedia.org/wiki/Diatomaceous_earth"<diatomaceous earth I bought to keep creepy crawlies from munching on my greenhouse plants!

            1. mouse says:

              @Chris – I missed this til just now. Lots of people get frustrated with drawing. The problem with drawing is that it is like a sport, most people (including artists) really have to do it alot and then do it consistently to get good at it and the learning curve can be frustrating. But gardening and sewing are definitely artistic endeavors. I must say, having had to majorly replant my front landscape for the 3rd time in 4 years. I’m beginning to think I kinda suck at gardening. But I still enjoy it, so it’s all good.

  19. Frederick says:

    I’m gone for couple of Days and the comments goes AWOL!
    SBM : Attack of the trolls ? ;)

    1. brewandferment says:

      Frederick, dear, I think you mean AMOK. AWOL is originally a military term that means (in English, I don’t know any other languages) Away Without Official Leave: someone who left their station/job without permission. If they don’t come back after a certain time or otherwise make it clear they don’t plan to return (cleared out their locker, etc) then they are called deserters. This comment string is clearly not deserted, although it might be said that some people’s brains have deserted them…

      Running AMOK is kind of like what happens when you bounce one (or more) of those small very bouncy balls in a small room with lots of hard surfaces and things that can be knocked over and broken!

      Smiley (cuz I don’t know how to make the happy little yellow faces!)

      1. Frederick says:

        Oh yeah I knew the meaning, but I have heard some americans use it in that kind of context, they were probably miss using it too. Thank for the english lesson.

        well as far as I know you just Need to make a smiley :-) : – ) ( no spaces)

  20. Preston Garrison says:

    I noticed a paper in PNAS recently that is possibly relevant here. It concerns solitary chemosensory cells in the nasal lining (of mice) that trigger inflammation that depends on a trigeminal nerve loop.

    http://www.pnas.org/content/111/16/6075.abstract?sid=ab540d03-cf40-4f3b-a96b-85e6846bf123

    This is interesting in relation to the specific accepted existence of non-allergic rhinitis, but there is also a possible general significance in that the chemosensory cell response depends on taste receptors and the taste transduction cascade, and this is in the nose. If there are solitary chemosensory cells in other tissues, it wouldn’t be too surprising if the same receptor cascades are mediating irritation in multiple tissues. If a downstream component of the cascade was giving it a hair trigger, this could be manifested as a general sensitivity to multiple ligands binding to different receptors that feed into the same pathway.

    I have a friend who has a general sensitivity problem to volatile stuff, typically perfumes and the like. He’s a very level-headed engineer, not a hysterical psych case. I don’t it’s wise to say this is a disease that doesn’t exist, when what you mean is that no disease has been defined at this time.

    1. WilliamLawrenceUtridge says:

      I don’t it’s wise to say this is a disease that doesn’t exist, when what you mean is that no disease has been defined at this time.

      I don’t think this is a fair representation of the skeptical position. The skeptic (perhaps just me) would say that no disease entity currently exists, and would welcome the paper above as a new addition of information which might one day be relevant to human health. The skeptic (again, mostly me) would also say that even given this new finding (assuming a similar circumstance arises in humans), there will be a group of people who claim MCS but for whom this finding doesn’t apply. There will always, in my mind, be a group of people for whom purely psychogenic issues cause or influence the interpretation of their symptoms. Certainly not all, but some, and the better we get at distinguishing objective causes, the better off everyone is.

      So this research is great and I hope it has implications for humans.

    2. DW says:

      The problem is that there are lots of “real diseases” that psychogenic ailments can piggyback on. It is not a coincidence that psychosomatic/psychogenic ailments piggyback on diseases and conditions with rather nebulous symptoms, and symptoms commonly experienced by large portions of the population. There is no good having a psychogenic heart attack, ‘cus testing will very quickly reveal that you did not have a heart attack, and home you go a few hours later. Cancer is no use either, obviously, because biopsy will tell you within a few days whether there is a malignant process going on, or not. Diabetes, again, a test shows quickly whether you are diabetic.

      This is basically the reason no one has a psychogenic broken leg. (I mean, I suppose it’s possible, but pretty rare …)

      “Chemical sensitivities,” conditions mainly involving fatigue and headaches and various rather mundane maladies that we all experience at some point, are much harder to pin down. The array of things a person could be sensitive to numbers probably in the millions, and headaches have thousands of causes. So these conditions afford a much longer and more complex testing process. This process itself is what psychogenic illnesses thrive and prosper on. As we all know, for some people it becomes their life’s work – finding a diagnosis, and expressing outrage left and right all along the way, at other people who are “dismissing their suffering” etc.

      And for not a small number, the testing and diagnosis process itself generates real physical problems (results of unnecessary surgeries, side effects of medications, etc.). Then there’s really no stopping the downward spiral.

      1. DW says:

        Then of course you factor in quacks. When the doctor hopping becomes chronic, the changes go up exponentially that some of the doctors the patient sees will be quacks. Partly because the chance of encountering bad doctors simply increases the more doctors you see, but also because individuals who suffer these conditions become quite adept at narrowing their doctor search to the type who will agree to run many unnecessary tests and/or to treat diseases whose existence is scientifically questionable or whose treatments are unproven.

        I have seen this in action. Individuals like this literally sniff out the good doctors, the ones with good scientific reputations, and avoid them on purpose.

        Or, if they live in a small town, they will work their way through the reputable docs and be left with the charlatans eventually. Who are happy to receive them.

        Also, for individuals like this, judgment may be clouded by emotion. This is understandable to some extent for anyone who feels ill, of course. But individuals who already have a tendency to somatize are by nature looking for more than physical relief from their symptoms – they’re very easily persuaded that they’ve found a “good doctor” if the doctor tells them what they want to hear and sympathizes profusely. They are therefore much more susceptible to doctors with great bedside manner and otherwise poor qualifications.

        It’s all a vicious circle – a horrible carousel that it is virtually impossible to get off once you are on it and it’s moving faster and faster.

      2. whoa says:

        No one who ever experienced an undiagnosed illness would ever accuse anyone of being a hypochondriac.

        1. DW says:

          That doesn’t make sense. No one would deny there is such a thing as an undiagnosed illness. But it sounds to me like you are denying there is such a thing as a hypochondriac. Is that what you think?

        2. WilliamLawrenceUtridge says:

          No one who ever experienced an undiagnosed illness would ever accuse anyone of being a hypochondriac.

          You don’t see that as a problem? Someone is not credible merely because they have an undiagnosed illness. Some people are genuinely hypochondriacs, and to say they aren’t merely because doctors have made errors in diagnosis in the past rather misses the lesson.

          1. mouse says:

            I haven’t been following whoa’s comments, but I suspect there is an issue with confusing hypochondria with various psychogenic and or somatization disorders all of which exist and people genuinely suffer from.

            This article (which I found after writing the my following comment, poor luck) is a good summary of different psychiatric condition that are often confused with “hypochondria”.

            http://www.currentpsychiatry.com/the-publication/past-issue-single-view/dont-be-fooled-by-hypochondria/26fbb3403873d16a34776b047103380c.html

            Hypochondria is often considered to be within the realm of obsessive compulsive disorders. These disorders are a cycle of worried anxious “obsessions” followed by checking “compulsions” that consume a dysfunctional amount or the sufferers time, energy resources. The most obvious examples are the worry that the stove have been left on, then repeatedly checking the stove. Contamination obsessions with washing and cleaning are another example.

            To be clear, in this case the focus of hypochondria is not the pain or other physical symptoms, it is the anxiety of feeling you might have a dangerous illness and the need to check with doctors, friends, articles in an attempt to alleviate that anxiety. As an aside, a great many people with OCD are aware that their anxiety/behavior is not rational/reality based, but the anxiety of the obsession is just too high to resist the compulsion. Many people with OCD “spectrum” disorders experience relief with SSRI like Paxil but also need CBT skills such as mindfulness, ERP or brain lock techniques (sorry, don’t recall the official CBT name.) Due to my anxiety disorder I belong to an online OCD group and have read a reasonable amount on the topic. All the OCD type disorders can suck big time, depending upon severity. It’s cruel to NOT treat a person for the disorder, if it is an accurate diagnoses.

            Psycogenic conditions and somatization disorders are when cognitive or emotional distress causes physical symptoms of pain, numbnesses, nausea, etc. The physical symptoms, rather than the anxiety over the symptoms are the main component and what need to be treated. In some cases these physical symptoms do respond to anti-depressants…I think sometimes the older ones have more evidence. But, I’m not a doctor.

            Fibromyalgia, from my reading, may be psychogenic pain, but may also be a form of central sensitization that was triggered by an illness or injury or nerve damage, maybe different for different people, way above my head there.

            Here’s a funny thing. People with lupus and also people with thyroid antibodies (to name a couple, wouldn’t be surprised if there were more) have a higher prevalence of OCD/anxiety disorders. So it’s good to keep in mind, one diagnoses does not rule out the other.

            And by the way, having an anxiety disorder and a somewhat undiagnosed condition(s) with a variety of symptoms I can say, yes some people, doctors and family/friends, do dismiss my “complaints” as being worried over minor symptoms or symptoms cause by stress or anxiety without appropriate medical information. Yes, it does SUCK when that happens, particularly when the complaint is painful or uncomfortable (shortness of breath or itching prickling skin). But IMO – the fact that some people misdiagnose painful conditions doesn’t mean that psychiatric causes of pain don’t exist, it just mean that we should continue to advocate for the most accurate testing and diagnostic standards possible.

            1. DW says:

              Thanks mouse. I agree with all that. “Hypochondria” is really a colloquial term, not a psychiatric diagnosis. And the disorders that fall under “somatoform” are multiple. Some of the very careful distinctions between them have vanished in the DSM 5, which I think is a shame because they were definitely spot-on for some people.

              That is part of the confusion here – someone who has a psychosomatic illness – or an illness with a psychosomatic component – is a very different thing than a person with old-fashioned somatization disorder. The former is something that afflicts most of us at some point. The latter is a very specific and basically a devastating mental illness, usually incapacitating the person for life. Its prognosis is very poor; patients generally resist psychotherapy – and perhaps rightfully so, because psychotherapy requires some capability for insight or introspection, and these patients often are utterly incapable of self-analysis or psychological insight. One theory is that it stems from childhood abuse. Many people become unable to work. It destroys families. (Ask me how I know.)

              1. n brownlee says:

                ” It destroys families. (Ask me how I know.)”

                Me, too.

              2. mouse says:

                Oh Good – glad we could clear up the confusion, then.

              3. DW says:

                Really brownlee? I’m kind of excited to meet someone with personal familiarity with this. I’ve always wanted to meet someone in real life who was raised by a parent with this problem, but I never have. It isn’t “hypochondria,” it’s a serious mental illness, as I guess you know. Want to form a support group? :)

            2. mouse says:

              ” It destroys families. (Ask me how I know.)”

              I can sympathize, although I don’t have people with mystery or undiagnosed illnesses in my family (mostly allergies, arthritis, stroke and cancer folks) there are a few people with psychiatric disorders – hoarding, addiction and schizophrenia with lack of insight. It is frustrating at best (going downhill to scary, god awful, heart wrenching, etc).

        3. Missmolly says:

          Whoa, YOU are the only person here suggesting that these people are hypochondriacs. Only you. If you actually read people’s comments, you would realise that.

          1. DW says:

            Well, to be fair, I think some of them are hypochondriacs. I don’t dismiss the idea that “multiple chemical sensitivities” actually affect some people, but I’m pretty sure there’s a strong psychosomatic component in some cases of this syndrome.

        4. KayMarie says:

          Undiagnosed for 48 years, still willing to call people hypochondriacs even during that, although I did get plenty of things that were wrong diagnosed along the way and fixed we didn’t know the thing that was making me way more fatigued than I should be.

          For me a lot of it is how reasonable are you about your illness. If everything serves to cause new symptoms you didn’t even realize you had until you read something, and be even more and more proof that you are dying, and nothing anyone says ever reassures you about any single symptom you have, and you pepper Dr. Google with a bazillion questions until you can find an answer that scares you even worse than all the previous answers (or like one I ran into on a support group get the support group to google for you because your psychologist banned you from google and all other medical websites for life)….

          I can’t help but think maybe, just maybe, there is some health anxiety issues going on that make you suffer far more than “just” your symptoms would cause anyone else.

          It always amazes me how much some of the people I know with serious, life threatening, disabling diseases do compared to some of the worried well, or worried and mildly to moderately ill.

          That being said, a lot of people have a something that ain’t quite right and may not be diagnosed. It is how much they do to handle it and move on and be as functional and as productive as possible vs how much effort is spent trying to make everything 10X worse than it is and find someone, anyone to verify that they are going to die next week at the latest.

      3. brewandferment says:

        Ha! I actually had a psychogenic broken leg…until the xrays made it a real broken leg…

        At 17 I had a motorcycle accident and since I was a minor, the ER nurse called to get admin permission to start an IV on me. The words were “a minor with a possible broken femur.” When she got off the phone, I indignantly demanded to know why she said, “possible” when I knew it was broken. She said, “well, we don’t know for sure, it might be nerve damage.” I harrumphed even more irritably, “When I tried to lift my leg, only about a third of my femur lifted up and there was a bend where there never was one before!” And she said, “well, we just have to wait for the xray to find out.”

        Now of course I know she didn’t have the authority to make a definite call, but I remember being distinctly pissed that I got what I perceived to be patronizing nonsense. And it wasn’t like I was being hysterical and freaked out by the whole thing, I was really pretty calm (in shock, I guess, cuz it didn’t start to hurt for quite awhile after I got to the ER). I didn’t let them cut my jeans off because, darn it, they were brand new ones that I’d bought with my own earnings!!!

        But of course it was broken like I said!

      4. Vicki says:

        One of my grandfathers apparently had psychogenic heart attacks (“apparently” because they don’t tell ten-year-olds that, I only learned this detail a few years ago, after an offhand remark to my mother about a family history of heart disease). Yes, the doctors always sent him home in a few hours.

        He stopped reporting symptoms of heart attack and being taken to the hospital for them after he developed Parkinson’s disease.

        1. Chris says:

          To explain how confusing symptoms can be, my son had a “psychogenic stroke.” First off he has had a history of seizures as an infant and toddler, then as he got older he had migraines (“Mom, the world turned purple.”), and then there was the genetic heart condition.

          So the third 911 call to our house almost three years ago was not for heart issues, but for what seemed like a stroke. The 911 operator heard his disorganized speech and this meant the response was very very fast. So instead of the ambulance taking him to the emergency department of the hospital that had a specialized cardiac center (like before), he was sent to the local teaching hospital’s emergency department…. which is just over a mile from our house and I can see from the second story, a $700 ride.

          So he got a head MRI, and a cardiac CATscan. It was determined he had a “complex migraine.” This is really a killer headache. A couple of weeks later he gets a cardiac MRI, which was good enough for the folks at the Mayo Clinic (who sent a poor exhausted fellow from the main medical office building to the hospital to stop an unnecessary multiple thousand dollar MRI).

          Wow! I married into a family with a history of migraines. I know the drill, when hubby gets one I put a cold cloth over his eyes, make sure he has taken ibuprofen, pull down all the shades and remove all noisy children from the house. I never knew about “complex migraines.”

          Fortunately, has hubby has gotten older his migraines have mostly disappeared. For the early-twenties aged son, his genetic heart condition complicates his migraines, so he has prescription for a genetic version of Xanax to help him calm down. The good news is that I had to call in to get a new prescription when the previous bottle was still almost full but had expired. It is not used very often, and there have been no 911 calls to this house in almost three years.

  21. whoa says:

    I think that anxiety and worry can amplify mild symptoms and cause a person to think they are sicker than they are. That kind of person is probably just neurotic and unhappy, and might benefit from a prescription for a pet or a hobby.

    There is a universe of difference between that person and someone who is suffering severe physical symptoms, but the cause cannot be determined with existing mainstream diagnostic tests.

    It was obvious from some of Dr. Hall’s comments that she thinks undiagnosed patients are likely to be of the first type.

    1. mouse says:

      I wouldn’t say that is obvious. In fact that’s not how I read her statements at all.

      Perhaps you are misunderstanding because your knowledge of psychiatric disorder is not accurate or up to date.

      I’d encourage you to read more on the topic, particularly focusing on the more neurological approach to psychiatry. The podcast BrainScience has many articles on the topic. I’m drawing a blank on good reading right now, but if I come up with something, I’ll post it.

    2. WilliamLawrenceUtridge says:

      I think that anxiety and worry can amplify mild symptoms and cause a person to think they are sicker than they are. That kind of person is probably just neurotic and unhappy, and might benefit from a prescription for a pet or a hobby.

      Wow, way to trivialize the suffering of human beings you were so concerned about over the weekend.

      There is a universe of difference between that person and someone who is suffering severe physical symptoms, but the cause cannot be determined with existing mainstream diagnostic tests.

      What’s the “universe of difference”? If someone is suffering from severe physical symptoms, versus sever mental symptoms, does the former somehow “win” and deserve more respect? Why? Because mental suffering isn’t really? You’re an asshole, an insensitive asshole, the kind who is responsible for the trivializing and stigmatizing of serious mental illnesses. Shithead.

      It was obvious from some of Dr. Hall’s comments that she thinks undiagnosed patients are likely to be of the first type.

      It’s obvious that you think that, Dr. Hall’s own words suggest that she would encourage ongoing discussion, encourage patients to return if new symptoms arise, and otherwise keep an open mind regarding a possible diagnosis, while recognizing that currently there isn’t one. That’s a far cry from your straw man that she would slap them a couple times for being weak and call them names.

      So, when you meet women with post-partum depression, do you just tell them to buck up and be happy with their new baby? Or someone with schizophrenia, they just need to realize that the voices aren’t real, right?

      Right.

    3. simba says:

      You are flat-out wrong about this. The mind can cause terrible, terrible pain, suffering and sickness- I have seen this happen.

      “That kind of person is probably just neurotic and unhappy, and might benefit from a prescription for a pet or a hobby.” Great. Tell that to people who damage their own skin the pain is so unbearable.

      Physical suffering, physical illness, physical symptoms are not the only ‘valid’ type or the only type deserving of sympathy.

      Again, you are projecting your own lack of empathy on to others. Take a step back and read what people are actually saying.

    4. DW says:

      I think this is one of the nastiest things about suffering of any sort – it sets people against each other. What I see here is one group of sufferers telling another group of sufferers that their (the other group’s) sufferings are not as “real” as their own. It turns out these folks are totally willing to condescend and talk down to and deride people who think they have psychosomatic symptoms, are “neurotic,” or just “need a pet or a hobby.” (Seriously? I can hardly imagine even the coldest doc, with the poorest bedside manner, offering such advice as “get a hobby” in this day and age. If you are seeing doctors who talk to you like this, you should report them for their unprofessional behavior.)

      So basically, I suspect this group definitely thinks there is such a thing as a psychosomatic or neurotic illness. It’s just that it’s other people suffering from that – not them. THEIR ailments are “real.”

      This is as much about the need for personal validation, for someone to put a stamp of approval on our suffering, as it is to find cures or strategies for managing a chronic condition.

  22. whoa says:

    I have had mental pain and physical pain, like most people I guess. Lots of both, and I know the difference.

    There are many things I can do for mental/emotional pain. I can reason with myself, I can do something useful, I can talk to friends, change something about my life that is causing me unhappiness, etc.. And I hope this won’t offend all the atheists here, but I can also pray and mediate.

    All those things work great. If someone has a severe psychiatric depression, then they might have to take drugs.

    But physical suffering is very different, in my experience. You can’t reason it away, you can’t always get rid of it with a pill. Certain kinds of physical suffering there just is no pill for.

    And if a doctor, or some other know it all, insists you are just imagining the pain, I think that is extremely cruel.

    Mainstream medicine tends to be very over-confident. I think it started when antibiotics were disc overed in the 1950s and doctors were seen as life-saving gods.

    At least CAM doctors are open to the possibility that a patient may be suffering from environmental toxins or allergins. The “skeptics” here don’t seem very open to that.

    1. Harriet Hall says:

      “if a doctor, or some other know it all, insists you are just imagining the pain, I think that is extremely cruel.”

      Yes, that would be cruel, but that happens extremely rarely, if ever. Certainly no one here has made any such suggestion.

      “At least CAM doctors are open to the possibility that a patient may be suffering from environmental toxins or allergins.”

      So are we; but we look for actual evidence.

      1. @Hall
        Your statement is wrong about the mental or psychological aspects of the perception of pain. Most Traditional providers have to believe this because they are unaware of the invisible causes of pain.

        All pain has a cause. This site tainted by Ingrahams conclusions discount this aspect of pain so the traditional providers have no other concept of what to think, do or how to help. These folks are left to suffer in vain.

        CAM providers have a few clues and are open but some also have been tainted by the false conclusions of Ingraham because others who believe his dogma refuse to promote alternative pain causes.

        Myofascial Pain and Dysfunction as per Travell, Rachlin and Gunn will corrupt the immune and regulatory systems.

        You concept of “actual evidence” is not set in reality but way out in the stratosphere and wrong.

        1. WilliamLawrenceUtridge says:

          Sigh.

          Your statement is wrong about the mental or psychological aspects of the perception of pain. Most Traditional providers have to believe this because they are unaware of the invisible causes of pain.

          What you’re really saying is “most traditional providers disagree with me, so I’m going to badmouth them”. It’s amazing how you, and only you, know the true causes of pain but are completely unable to cite any evidence to support your beliefs.

          All pain has a cause. This site tainted by Ingrahams conclusions discount this aspect of pain so the traditional providers have no other concept of what to think, do or how to help. These folks are left to suffer in vain.

          Yeah…Paul doesn’t control content. He doesn’t even write articles for SBM. In your mind, do you think he has some sort of diabolical control over the posts here to ensure they all adhere to his orthodoxy? I would venture that a) most contributors here don’t talk about musculoskeletal pain that often, and b) if they do they would rely on the scientific literature, not Paul’s posts.

          And for that matter, having read Paul’s discussions of trigger points and pain, he’s mostly advocating for a suspense of judgement. He is quite critical of the claims about trigger points as lacking a scientific foundation, and quite critical of the lack of funding and expertise regarding muscle pain, but he’s very, very supportive of self-care for trigger points. Paul doesn’t claim that trigger points don’t exist, he’s claiming they are poorly understood. Oh, and acupuncture sucks.

          Did you read his work? Did you understand it?

          CAM providers have a few clues and are open but some also have been tainted by the false conclusions of Ingraham because others who believe his dogma refuse to promote alternative pain causes.

          You do realize that Paul is staunchly critical of CAM practitioners, don’t you? And most CAM practitioners would actually disagree with, indeed hate Paul and his work? I mean you’ve just promoted him from “head of all SBM” to basically the satanic overlord of a cabal of CAM practitioners trying to keep effective treatments down”.

          And again – Paul’s claims are not dogma. He is scrupulous about citing sources and discussing the strengths and flaws of each source. Unlike you, he’s actually read them. Dogma is belief in the absence of evidence – which is what you insist upon. Requests for evidence are met with claims of bias and insults, and that’s dogmatic.

          Myofascial Pain and Dysfunction as per Travell, Rachlin and Gunn will corrupt the immune and regulatory systems.

          How? How do muscle knots “corrupt” the immune and “regulatory” systems? Muscle is generally pretty isolated tissues, in the absence of massive crush injuries or myofibril breakdown, it’s pretty independent of the rest of the body, how does it magically control the immune system and the “regulatory” system?

          You concept of “actual evidence” is not set in reality but way out in the stratosphere and wrong.

          My concept of “evidence” is having some. What’s outlandish about asking for evidence before believing someone making incredibly outlandish claims? My concept of evidence is something that is predictable, replicable and supported by multiple methods and studies that converge on a coherent idea. What is so outrageous or objectionable about that?

        2. DW says:

          I love when CAM proponents tell us that the dreaded “traditional” providers (or the rest of us) “have to” believe something, because we’re deluded, blind to the truth, etc.

    2. Chris says:

      “At least CAM doctors are open to the possibility that a patient may be suffering from environmental toxins or allergins.”

      Why did I spend over an hour suffering with two arms covered in felt pen numbers and various pricks to find out what was causing my hives? So why did my family doctor tell me a few years later that I was allergic to nickel if he was not open to allergens? Why did the blood donation center stop using iodine wipes?

      “The “skeptics” here don’t seem very open to that.”

      Have you actually read the article and the comments on this page? It seems to counter that assertion. All you have to do is bring some real verifiable evidence.

      1. @Chris
        Most to these bloggers are not skeptical which is a healthy amount of uncertainty and disbelief and not even cynical but over the top dogmatist or despotic.

        A despot will inflict harm to anyone who does not believe in their doctrine.

        Everytime I visit this site I am reminded of the evils of mankind.

        1. WilliamLawrenceUtridge says:

          Most to these bloggers are not skeptical which is a healthy amount of uncertainty and disbelief and not even cynical but over the top dogmatist or despotic.

          A despot will inflict harm to anyone who does not believe in their doctrine.

          Everytime I visit this site I am reminded of the evils of mankind.

          Jesus Christ, really? Contributors here have merely asked you for reasonable evidence to support your claims, nobody is wandering around eating kittens and oppressing the black man. Believe it or not, if I meet someone who has tried acupuncture, I ask them why and how it felt – I don’t punch them in the face or slash their tires.

          What is wrong with you? You’re treating this like some sort of titanic struggle between good and evil – it’s just a blog where people recognize how bad the mind is at attributing causality. Delusions of grandeur much?

        2. DW says:

          You surely realize that when you huff and puff about things like the “evils of mankind” just because you’re looking at a science blog, you kind of discredit yourself among reasonable people.

    3. WilliamLawrenceUtridge says:

      I have had mental pain and physical pain, like most people I guess. Lots of both, and I know the difference.

      How do you know? How do you know some of your allegedly physical pains weren’t purely psychological? That’s rather the point – if patients could reliably show up and said “I have a purely psychological pain that I need treated”, doctors lives would be much easier. Purely psychological “physical” pain can exist (it’s the very diagnosis of somatization) and it is indistinguishable from purely physical pain. I don’t think you quite grasp that fact.

      There are many things I can do for mental/emotional pain. I can reason with myself, I can do something useful, I can talk to friends, change something about my life that is causing me unhappiness, etc.. And I hope this won’t offend all the atheists here, but I can also pray and mediate.

      1) This assumes that you even know it’s a “mental” pain. People who show up with somatization don’t say “yeah, I’m getting a divorce and it’s causing me terrible wrist pain”, they show up with terrible wrist (or gut, or head, or wherever) pain which makes no sense physiologically, but over time an exploration of other areas of the patient’s life it turns out they have considerable psychological stress and suffering which manifests as a physical pain.

      2) This is also as offensive as your earlier comment, as in both cases you are essentially saying that if the suffering patient would just “man up”, their suffering would go away. That’s not how mental illness or mental pain works. Have you never ended a relationship or something? Pain, mental or physical, is not logical.

      All those things work great. If someone has a severe psychiatric depression, then they might have to take drugs.

      Clearly you have no fucking clue what severe psychiatric depression, or even mild depression, looks like. There are people who write books and blogs, or make movies based on their depression, how it consumes and destroys them, how it imposes like an unwelcome guest, or grinds them to a gory paste like an emotional lathe. You might try hyperbole and a half‘s posts as a starting point (part two) and maybe try excising the unspoken assumption lingering in your brain that depressed people are just weak and lazy. Another webcomic you could try is Depression Comix (and I heartily recommend the author’s other, hideously offensive and hilariously inappropriate work, but I will not link to it). And of course, there’s the cerebral manga series Neon Genesis Evangelion if you want something that combines meditations on loneliness with giant robots whose pauldrons brush the clouds.

      I view comics as a medium with tremendous promise, but I also read the ones where Spider-Man beats up Doc Oc. I have a rich internal life.

      But physical suffering is very different, in my experience. You can’t reason it away, you can’t always get rid of it with a pill. Certain kinds of physical suffering there just is no pill for.

      May I suggest that your experience in no way represents the experience of all humanity.

      And if a doctor, or some other know it all, insists you are just imagining the pain, I think that is extremely cruel.

      Do you think it’s cruel to take someone with purely mental pain and tell them it must be physical? Perhaps the inevitable doctor-shopping, endless visits to quacks and invasive tests (to say nothing of the ongoing mental suffering driving the pain) is cruel in a different, more drawn-out way. Further, as Dr. Hall and others have said – it is unlikely they would say “you are imagining the pain”. The pain is real (assuming it’s not malingering), irrespective the cause.

      You’re projecting your beliefs onto, in fact over top of, what has actually been said, and revealing a remarkably naive appreciation for both medicine and human psychology in the process.

      Mainstream medicine tends to be very over-confident. I think it started when antibiotics were disc overed in the 1950s and doctors were seen as life-saving gods.

      At least CAM doctors are open to the possibility that a patient may be suffering from environmental toxins or allergins. The “skeptics” here don’t seem very open to that.

      That’s hilarious. Real doctors are essentially required to admit to their ignorance and when their knowledge base can no longer provide them with answers. CAM practitioners will claim, in the absence of any evidence, to have not only the cause of all disease, but the cure for all disease – all mutually contradictory.

      Environmental toxins have effects on the body, and allergic reactions will produce objective changes in physiology. Real doctors will talk about real allergies with reflections on how allergies actually inflence symptoms. That’s what the tests are for! It is only when the test shows negative or equivocal results that doctors will begin looking for other results.

      Meanwhile a CAM practitioner really doesn’t have a solution, or not a real solution. What they have is one, or perhaps a couple nonsensical, unvalidated, and untested remedies they apply to all of their customers. Rather like the doctor from the Blackadder II episode “Bells”.

      1. DW says:

        This is a great reply. I’m thinking that the “How do you know?” piece is really at the heart of all this. These defensive and feeble arguments from “whoa” really get to this. He has no idea how he knows – he just knows. Science-based medicine, on the other hand, functions because the question of “how do we know” has been really vigorously addressed, and criteria and standards set for claiming that we “know” something – namely, evidence, and reasoning from known facts. These criteria are anathema to the superstitious mind, which would so much rather “just know,” without reference to any reality outside one’s own internal processes.

        I don’t think it’s a coincidence that it’s this mindset that afflicts many people who are certain that “they know” what is wrong with them and are compelled to a test of wills or power struggle with a doctor (or multiple doctors) because the doctor won’t agree, as the evidence doesn’t confirm what the patient “knows” – evidence that would offer some objective confirmation that the patient’s subjective report corresponds to something out there in the real world.

        1. WilliamLawrenceUtridge says:

          Honestly, I was hoping for a little more praise on my ability to bring giant robots into the debate. But that’s OK, I guess general praise is fine as well.

          :P

          1. Missmolly says:

            When I read your post above, I was all ‘ooooh, he loves all the BEST comix!’ But then I got too distracted reading archives of sexy losers to express my abiding admiration! Hope you have also found oglaf- I am sure you have :)
            Ps the ending of neon genesis sucked monkey balls :( yes, even the movie. What a let-down!

            1. WilliamLawrenceUtridge says:

              Yes, I’ve found Oglaf, and found it hilarious. Come to think of it, I neglected to check it yesterday for my Sunday dose of filthy fun.

              The manga of NGE is something good to read to complement the anime. It’s a little more explicit about what’s happening. I also supplement with a generous perusal of the wiki, where numerous hitherto-obscure things are made clear.

              For web comics, I also recommend Grrrl Power, Erfworld, Order of the Stick and Dr. McNinja.

    4. AJB says:

      Apparently, you have found that making disparaging remarks about about imaginary doctors is what it takes to relieve your pain, but I am skeptical that it is working.

    5. DW says:

      Whoa, in all seriousness, I think it’s evident to many reading this that although you’re certain you “know,” you don’t know. One of the main revelations of science is that we often don’t know what we think we know. This is the reason doctors run tests in the first place. If the patient “just knew,” what really would we need doctors for at all? You’re not the first commenter just in this thread to insist that they diagnosed themselves independently of the doctor’s help, leaving it unclear why they’re so mad at doctors, if they don’t need the doctor’s help anyway.

      It is definitely not simple to distinguish mental from physical pain. It is not even clear that the distinction is particularly meaningful. And it is definitely not the case that we are always the best judge of what is going on in our own innards (mental or physical).

      There is very little doubt that it is possible for physical pain to have mental causes, and in terms of the two experiences, they are utterly indistinguishable. Because, of course, they are THE SAME.

      It is equally possible for mental pain to have physical causes. Any good doctor keeps both possibilities in mind in diagnosing. What looks like depression may be a sign of a serious underlying physical illness. What looks like a serious physical illness may be of largely psychological origin. Or both in the same person at different times or even both in the same person at the same time.

  23. All of these arguments are related to a couple of concepts that are invisible to some of today’s scientist and providers; pain and the treatment of pain.

    Denial that chronic pain or dysfunction is an “invisible” entity, embedded in muscles and is relevant. Ignoring this primary disease will lead to poor outcomes, confusion and frustration.

    Denial of the proper therapeutic procedures to treat this type of pain will lead to secondary neuralgias, arthritic and vascular diagnosis.

    Further delay in therapy or denial of this entity will lead to tertiary dysfunctions;
    mental, emotional, immune, GI and GU.

    The proper treatment is based on what I have been blogging about.

    1. WilliamLawrenceUtridge says:

      All of these arguments are related to a couple of concepts that are invisible to some of today’s scientist and providers; pain and the treatment of pain.

      So you are claiming that doctors don’t ask about or ignore patients who complain of pain? Really? That there isn’t widespread recognition of the need for non-addictive pain relief, that there isn’t enormous amounts of money and time going into pain, pain relief, pain prevention and palliative care?

      Denial that chronic pain or dysfunction is an “invisible” entity, embedded in muscles and is relevant. Ignoring this primary disease will lead to poor outcomes, confusion and frustration.

      Doctors don’t ignore pain, chronic or otherwise, they merely want better and in particular evidence-based options. They don’t want to waste patients’ time or expose them to risks in the absence of clear evidence of benefits. The monstrous, cackling sadists of your fevered imaginations are straw men wearing funny masks that you cut out of construction paper and called your enemy. Get help.

      Denial of the proper therapeutic procedures to treat this type of pain will lead to secondary neuralgias, arthritic and vascular diagnosis. Further delay in therapy or denial of this entity will lead to tertiary dysfunctions;
      mental, emotional, immune, GI and GU.

      Citation needed. Also, if there were evidence to support a “proper” therapeutic approach, that approach would be used.

      The proper treatment is based on what I have been blogging about.

      Yeah, but nobody reads your blog because you come across as a deluded nutjob with a persecution complex. Your increasingly shrill complaints, tangents and disparagements probably doesn’t help.

      1. Frederick says:

        Each time you read of of his post, it seem that you already have read them, it is always the same empty sentences. Always circulating back to “Screw you guys, I’m better than you”. I’m not into badmouthing people here, But I think Mister Alex lifeson Had once a super way of summarizing all of what SSR ever written on this blog, in those 3 minute.

        https://www.youtube.com/watch?v=YHjQZJ1RLQA

        lol…

        1. WilliamLawrenceUtridge says:

          Naw, there’s nowhere near enough paranoia and deluded self-importance to capture Stevie’s babble, funny as Lifeson is.

          1. Frederick says:

            It’s more the BLAH BLAH part, because that’s what it is for me.

        2. mouse says:

          “Each time you read of of his post, it seem that you already have read them, it is always the same empty sentences. ”

          I just don’t read them. I mostly read comments from people who have a history of making interesting, informative or useful comments.

          Maybe that’s selfish, but it makes my life more enjoyable.

          1. WilliamLawrenceUtridge says:

            I just don’t read them. I mostly read comments from people who have a history of making interesting, informative or useful comments.

            Horrible confession, I spend a truly unnecessary amount of my time re-reading my own comments. An act so close to masturbation I feel it requires the same degree of tact and discretion (you know, things like “not talking about it to strangers on the internet’).

            1. Bruce says:

              If reading your own comments is close to masturbation, is reading your own comments about reading your own comments close to watching a video of yourself masturbate?

              On a slightly related note, here and on Neurologica I will often write out a whole post, read it, then copy it to clipboard and refresh the page… and often find someone has said what I wanted to say but more succinctly. The number of words deleted before posting outweighs those actually posted by a factor of at least 10.

              1. CHotel says:

                That has happened to me so many times, and I swear like >95% of them have been Andrey. If I wasn’t so flattered that he and I had the same thought process I’d be a lot more peeved.

              2. WilliamLawrenceUtridge says:

                Really what I need is a reflective monitor that I can use to watch myself while I read my comments/masturbate.

                On a slightly related note, here and on Neurologica I will often write out a whole post, read it, then copy it to clipboard and refresh the page… and often find someone has said what I wanted to say but more succinctly. The number of words deleted before posting outweighs those actually posted by a factor of at least 10

                I have never, ever allowed that to stop me from posting a comment.

            2. mouse says:

              Hah! I read my own comments too, but I don’t think it’s close to masturbation*. I am so often mortified at the number of errors I make. I’m just hoping to have some warning on which grammatical, logical, rhetorical cowpile I’ve stepped in before some other SBM commentor pings me on it. It seldom works, though.

              *unless it’s some sort of off-quilter virtual mortification of the flesh, derivative. Ohhh, sorry probably should go there.

            3. mouse says:

              WLU “Really what I need is a reflective monitor that I can use to watch myself while I read my comments/masturbate.”

              Thank god I don’t know what you look like, because that’s they only thing standing between me and an inappropriate mental image.

              1. WilliamLawrenceUtridge says:

                Imagine Steve Buscemi with 36-inch biceps and a pronounced limp.

              2. mouse says:

                Is he green and playing the Hulk? Because the only way Steve Buscemi is getting 36″ biceps is through special effects (his legs would breaks under the weight).

                Damn that man can tap. I would be someone if I could tap like that.

              3. WilliamLawrenceUtridge says:

                Holy fuck, isn’t it amazing not just that Steve Buscemi can tapdance, but how well he can tapdance?!?!??!?!?!?

                Between that, Boardwalk Empire and Desperado, he might just be my favourite person ever.

  24. whoa says:

    “This assumes that you even know it’s a “mental” pain. People who show up with somatization don’t say “yeah, I’m getting a divorce and it’s causing me terrible wrist pain”, they show up with terrible wrist (or gut, or head, or wherever) pain which makes no sense physiologically, but over time an exploration of other areas of the patient’s life it turns out they have considerable psychological stress and suffering which manifests as a physical pain.”

    I know that psychological stress can cause muscle tension, which can cause physical pain. There are many very effective treatments for that kind of pain.

    Severe chronic depression probably has a physical cause, so I wouldn’t necessarily call it psychological pain.

    Normal sadness is definitely not something anyone has to get stuck in.

    Pain that is really psychological is a passing thing, and it does not create intense physical suffering.

    Harriet Hall did make a comment that fibromyalgia is not different from the “fake” diseases. So I do consider that a cruel attitude towards fibromyalgia patients.

    I very strongly believe that fibromyalgia is caused primarily by physical factors (especially subluxations of the upper cervical spine — I know you “skeptics” will all go along with that). But it can be worsened by psychological stress, via increased muscle tension.

    1. DW says:

      “Pain that is really psychological is a passing thing, and it does not create intense physical suffering.”

      What the hell. How could you POSSIBLY believe this.

      1. DW says:

        I mean, I guess if you do really believe this, it’s understandable that you’d be indignant if a doctor suggested it. It seems to be actually YOU who believes that psychogenic or psychological pain is not as “real,” not as worthy, as other types of pain. When doctors mention this possibility, they’re (unintentionally) holding a mirror up to you to see yourself. The outrage is your own outrage against yourself, because you feel your condition is shameful or at least not “real,” and you then project this back onto the doctor.

        The doctor hasn’t insulted you, you’ve insulted yourself. And the doctor isn’t refusing to treat you if he/she suggests you consult a psychologist. It’s you who are turning down possible practical help in the form of a referral.

      2. whoa says:

        65 years of personal experiences.

        1. Chris says:

          Which is exactly the opposite of the title of the blog. Go up, read the name of the blog and figure out why it is not “In my experience medicine.”

          We really don’t care about your experience and opinions. Try bringing in some actual citations to support your claims.

        2. WilliamLawrenceUtridge says:

          I’ve never had psychogenic pain, as far as I know. I still believe that it is possible, and not merely the result of some form of mental weakness. Meanwhile, you have had several actual doctors who have told you explicitly that they have treated patients who express psychological pain through somatization.

          Why is your absence of personal experience superior to their actual experience of somatizating patients?

          Further, personal experience is extraordinarily bad at providing us with true information. Personal experience teaches us the sun and planets revolves around the earth, the earth is a stationary object, that mountain has always been there, the continents are immutable forms, the animals that exist today have always existed, solid objects are actually solid and not mostly empty space, polio isn’t particularly dangerous, and if you watch Fox News, black people are more prone to crime. Personal experience convinces homeopaths that their sugar pills have effects, surgeons that knee tissue debridement is an effective treatment for osteoarthritis, and for thousands of years, that bloodletting was a safe and effective medical treatment.

          Maybe don’t trust your personal experience quite so much.

  25. WilliamLawrenceUtridge says:

    I know that psychological stress can cause muscle tension, which can cause physical pain. There are many very effective treatments for that kind of pain.

    You’re still assuming that the pain is really only manifestations of mechanical problems rather than purely psychogenic factors, which is unwarranted and unsupported by centuries of data and publications.

    Severe chronic depression probably has a physical cause, so I wouldn’t necessarily call it psychological pain.

    Once you get down to a certain level, the disparity between body and mind break down, but again you really don’t know and really don’t seem to want to admit that you don’t know. You’re projecting your naive beliefs onto all sufferers of pain and depression, which is arrogant, condescending and generally shitty of you.

    Normal sadness is definitely not something anyone has to get stuck in.

    Oh, so now you’re deciding what “normal sadness” is and that people just “get stuck in it”? Well thank you Jesus, we can stop worrying about mental illness. Whoa here has cured it – people just “get stuck”.

    Talking like this makes you sound like an asshole, and if any of your family or friends are actually suffering from depression, your dismissive attitude will just make them feel worse and withdraw from you.

    Harriet Hall did make a comment that fibromyalgia is not different from the “fake” diseases. So I do consider that a cruel attitude towards fibromyalgia patients.

    Really? Can you link to this comment? Because when you made this claim before, she rather sharply denied she ever had. My search for fibromyalgia on this page turned up no such comment from Dr. Hall, perhaps you’d like to link to it for us, or provide a relevant quote?

    I very strongly believe that fibromyalgia is caused primarily by physical factors (especially subluxations of the upper cervical spine — I know you “skeptics” will all go along with that). But it can be worsened by psychological stress, via increased muscle tension.

    a) Why don’t you just tell the fibromyalgia patients it is all in their heads and they should just get over it? I bet it’ll help.

    b) Subluxations don’t exist

    c) No reputable sources seem to back up your assertion. Have you just decided this, like you decided depressed people were just sissies?

    There’s something called the “Dunning-Kruger” effect. What it comes down to is this – nonexperts seem to think that areas they are not experts in are somehow easy. You’re exhibiting prime Dunning-Kruger in your assumptions that fibromyalgia, a complicated and poorly-understood condition is merely a form of muscle or joint dysfunction and that mental illness is merely a matter of personal weakness. Actual experts disagree, and also recognize just how devilishly complex the condition can be. Maybe drop your certainty a notch or two; if hundreds of doctors and thousands of patients haven’t figured it out, your glib “it’s just muscle pain” idea might be a little oversimplified.

    1. whoa says:

      I am sorry you are such an angry person. You must be extremely unhappy.

      1. WilliamLawrenceUtridge says:

        Not at all, in fact commentors like you make me extremely happy because I love to argue. More specifically, I love to win arguments by trouncing my opponents with simple facts, obvious thought exercises and crass jokes at their expense. In that regard you’ve been a delight, and your most recent comment, which might as well have an electrified sign saying “Oh shit, I just lost the argument”, has greatly improved an already excellent mood. Saying “I feel sorry for you“, means that you can’t think of any facts or logic that refutes my statements, you can’t think of any insults clever or funny enough to belittle me, and are ultimately merely a way of bowing out while trying (emphasis on trying, unstated assumption being trying but failing) to save face.

        I have a wife that loves me very much, friends whom I quite enjoy, family I am very close to, a job that is both challenging and not stressful, a broad set of really quite varied interests, and live in a technological and infrastructural era and geography that affords me nigh-unlimited entertainment, opportunities for artistic enjoyment, and intellectual stimulation. No, I’m quite happy, and also generally a very cheerful and positive person.

        I’m also not an unthinking douchebag who thinks the mentally ill are just weak.

        1. mouse says:

          WLU – That was so deliciously evil even I couldn’t help enjoying it.

          1. WilliamLawrenceUtridge says:

            I must say, it was truly enjoyable to write out. Rarely does one have such a well-presented opportunity for a takedown.

            So thank you whoa, you made my day!

        2. Windriven says:

          Goddamit William, your comment must have gotten held in moderation for the ‘s’ word. Sort of makes mine superfluous. Can’t the internet gods give those of us who rarely infrequently all too often succumb to richly deserved four-letterisms a break? Or perhaps the potty-mouthed among us can agree on a common form of bowdlerization. But then that would be lost on the targets, wouldn’t it?

          1. WilliamLawrenceUtridge says:

            That comment I mostly wrote for my own amusement (come to think of it…that applies to nearly all), hence I’m not too upset by it being delayed in moderation. Like the Sistine Chapel, which I will see later on this year for a second time in my life, it’s worth waiting for.

            1. mouse says:

              When you are in Rome, If you have time, I highly recommend this.
              http://www.lonelyplanet.com/italy/rome/sights/religious/chiesa-di-san-nicola-carcere

              Not at all Sistine Chapel like…just cool very old stuff.

              1. WilliamLawrenceUtridge says:

                “Cool old stuff” is pretty much the reason I want to revisit Rome. That and the food. And the coffee. And the shopping.

                I’m also really looking forward to seeing the crypt in Santa Maria della Concezione dei Cappuccini, which I somehow missed my last visit.

                And I’m looking forward to seeing the Pantheon again.

                And Castel Sant’Angelo.

                And buying several cans of shaving cream from that one place where it used to be a monastery.

                Sigh. Rome is awesome.

              2. mouse says:

                You forgot the wine.

                Yeah…If I wasn’t already pissed at you for having such an awesome happy life I’d be pissed at you for going to Rome. ;)

              3. WilliamLawrenceUtridge says:

                Just so you know, your envy will make me enjoy my trip even more.

              4. mouse says:

                I figured. That’s why I told you. I’m generous that way.

      2. n brownlee says:

        We are sorry you’re such an ignorant person. You must be dense as a bois d’arc stump.

      3. Windriven says:

        Yeah, well you clearly don’t know William well. He reserves his anger for the intentionally stupid and the vapidly self-delusional. People like you. People who make broad, sweeping statements without a shred of evidence on offer to support those statements.

        What you have, whoa, are opinions. Nothing more. Opinions count for things like the relative desirability of a pair of shoes. Not so much when it comes to the etiology of pain other than when it is your own and no one else’s.

  26. gray says:

    Its easier to attribute it to psychological causes. i often get chest pain then my heart rhythm changes. then i search for the cause such as someone driving near me smoking. i get allergic reactions to simple fruit or uncooked vegetables. Its not psychological . perhaps a few people have coexisting issues but that doesn’t make it the cause. maybe it’s from being told we’re crazy bc no one feels our chest pain or our heart stop. n maybe we care so much bc we want to c our children grow up like anyone else.

    1. n brownlee says:

      Or- maybe you have a heart problem that needs to be addressed by a physician.

  27. Anna says:

    While I agree with you that symptoms like “headache, fatigue, confusion, depression, and muscle/joint pain” are difficult to objectively measure, people with MCS are not limited to these symptoms, particularly in the more severe cases.

    Before anyone ever told me about MCS, I was diagnosed with chronic bronchitis (and eventually asthma when the chronic bronchitis failed to clear up) using a simple peak flow meter — a very straightforward and cheap diagnostic tool. The standard conventional treatments were attempted. An antibiotic to rule out a bacterial infection. (No benefit, wreaked havoc on my already weakened digestive system.) An inhaler. (The pharmacist looked at my history and warned me that I might be allergic to the inhaler. He said I should skin test the inhaler before using it internally. He warned me to do this more than once since allergic reactions often do not occur on the first exposure. Sure enough, I broke into a rash. He said it was most likely the propellant itself I was reacting to, and since older style CFL inhalers are no longer legal in the US, I would have to do without an inhaler. I feel very fortunate to have gone to a pharmacy that offered such personalized service.) A steroid — prednisone. (Turned out one of the symptoms of prednisone was difficulty breathing.) After a time, my physician was shocked to learn that my housemate was still smoking cigarettes indoors, in spite of the worsening of my condition. (My housemates, including the smoker, felt that it was my responsibility to take medication so that I could tolerate second and third hand smoke, and that the smoker was entitled to smoke wherever he felt like it because he had PTSD from military service. One of them was even yelling at me as my throat actually shut itself off and I passed out. They were extremely hateful and kept telling me “everyone says you’re crazy”.) My physician told me that if the housemate was unwilling to cease smoking indoors (even when I wasn’t around, since the smoke settled on all the carpets and soft furniture), that my asthma had become bad enough that she was scared for my life, and I was better off living literally anywhere without indoor smoking — outdoors, a homeless shelter, a friend’s car, a hotel room, whatever, as long as there was no indoor smoking. (When I left without giving a month’s notice, my housemates reacted with further hatred.) She also suggested that perhaps I should see a specialist if I could afford to.

    A non-smoker’s rights organization provides an extensive list of studies linking asthma and second hand smoke.
    http://www.no-smoke.org/getthefacts.php?id=755

    The World Health Organization estimates 600,000 deaths per year, and 1% of the global disease burden, are from second hand smoke.
    http://www.who.int/gho/phe/secondhand_smoke/en/

    If it had only been the second hand smoke, I probably would have gotten better, in spite of the severe reactions I had just from passing a smoker on the sidewalk. Unfortunately, even as I moved out of that house, I was starting to have asthma reactions to other things too. Mild at first but worsening over time. It was because of this that someone suggested I might have multiple chemical sensitivities. Perhaps I should not have been as surprised as I was. Second hand smoke and car exhaust both contain carbon monoxide and benzene. Vinyl chloride is used to make cigarette filters and it also make plastic consumer products. Naphalene is found in both cigarette smoke and moth balls. Formaldehyde is found in both cigarette smoke and carpet emissions. Acetone is found in cigarettes, perfume, and nail polish remover. Toluene is found in cigarettes and paint. Phenol is found in cigarettes and plywood. With perhaps 4000-7000 chemicals in second hand smoke, I’m sure the list goes on.

    I have had asthma reactions even when I couldn’t smell anything. Sometimes, like when I couldn’t smell due to a cold, someone else was able to help identify what I was reacting to.

    It’s true that a lot of my non-asthmatic symptoms (chronic migraine, moderate chronic to severe acute insomnia w/ weird hallucinations, digestive issues, confusion, eczema, joint and muscle pain and weakness) would be impossible or at least difficult to measure objectively, possibly requiring much more expensive testing. But for the most part (barring a few really weird incidents involving temporary paralysis), lung and throat issues are the symptoms I consider most severe. I don’t think this is unusual. Many moderate to severe cases of MCS involve at least *something* you can measure, even if it doesn’t fully explain everything else that’s wrong with them or why they might not be able to tolerate conventional treatment. Even patients experiencing primarily neurological issues have had some luck being scanned with SPECT technology, if they can afford it.
    http://www.ourlittleplace.com/spect.html

    If you aren’t looking at patients with at least one measurable problem, you are probably looking only at mild/the early stages of MCS. In my non-professional opinion, even people with only mild MCS should exercise caution, lest their condition worsen. However, to fully understand the issue people describe when they self-identify as having MCS, you should look at the full spectrum of severity.

    1. Harriet Hall says:

      “Many moderate to severe cases of MCS involve at least *something* you can measure”

      Normal healthy asymptomatic people are also likely to have at least something you can measure. One example: signs of herniated discs are frequently seen on MRIs of people with no back pain. Measuring something is useless unless you compare measurements in symptomatic people to measurements in asymptomatic people. Good studies that did that for MCS have not led to any consensus or to any reliable diagnostic tests.

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