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Itching and the Imaginary Passenger Brake

The press and government agencies ally to shine a disproportionate amount of publicity on false and improbable medical ideas. (Danger: Congressmen and reporters at work.)

The latest was a press release from either the Centers for Disease Control (and prevention? – I’ll get to the “prevention” part later,) or from Kaiser-Permanente Medical Group. Three Bay Area newspapers carried simultaneous articles. The articles announced a new, $338,000 CDC/Permanente study of something they call “Morgellon’s disease.” I say they call it that because what they are describing is not what was originally described as “Morgellon’s,” but what is most likely a form of somatiform illness – delusional parasitosis, or neurodermatitis.

What is Morgellon’s and why is CDC funding Kaiser/Permanente with $338,000 to study it? I was never taught about anything called Morgellon’s, and althoughI had practiced medicine for forty years, I still had not known of it until several years ago when a group of affected San Francisco patients and R L Stricker MD, were reported as having a number of cases of it.

It turns out that in 2001, a South Carolina biologist named Mary Leitao, mother of a young son who complained of painful, itching skin lesions, somehow found reference to an obscure report of a disorder describd by a person named Morgellon from 17th century France. A drawing from that period or later showed a skin opening with a sizeable wormlike object protruding from it. From the picture, the mother proposed her son had a form of that disorder, and she named it Morgellon’s. No such disorder was known to exist in modern times.

In 2006, newspapers reported that SF’s Dr. Stricker and another physician had accumulated increasing numbers of patients complaining of similar symptoms. The Bay Area, Los Angeles, Florida and a few other areas became centers of these cases, but then reports began coming from UK, Australia, and Canada. No specific diagnosis could be made on these people, whose skin lesions they reported exuded fine threads of black, blue, red, or white material. No constant bacterial cultures were found, but the physicians treated patients with antibiotics, nevertheless. They claim that they found high incidence of antibodies to the bacterial agent of Lyme disease. The sources of the pieces of fine thread could not be identified, but suspicions were that they came from clothing and other materials, rubbed into the breaks in the skin, produced by scratching.

Cases accumulated world-wide, most reports came from English speaking countries. Dermatologists recognized the paients as having “delusional parasitosis,” and treated them with anti-depressants on the assumtion of a somatiform reaction to anxiety or depression.

If this all sounds familiar, it should. A similar phenomenon in the mid-1980s began at South Lake Tahoe when a single internist claimed that scores of people accumulated in his practice, all of whom reported chronic fatigue, mental fogginess, muscle aches, and other symptoms but with no physical findings. (Ask any internist or family practitioner what percent of patients have those symptoms.) That was the germ of the chronic fatigue syndrome epidemic that resulted when millions of people who were feeling tired or depressed suddenly realized they could have a real disease, and bandwaggoned together to form a mass sociogenic illness of unprecedented volume. Newsweek and other news sources reported the problem as a real organic disease, estimating some 2 million cases in ther US alone. Curiously, no such masses accumulated in most other countries. CDC is still “looking into it” spending millions of dollars on what has been historically established as a mass delusion.

The late Stephen Straus made his reputation when assigned to lead the NIH investigation into chronic fatigue, leading to his eventual appointment as the last Director of the National Center for Complementary and Alternative Medicine. (He never solved the “problem” but added to the confusion by finding non-specific blood pressure and other changes in CFS patients.)

A characteristic of episodic, localized sociogenic illesses – sick building syndrome, schoolgirl fainting, etc. – is that they spread by line of sight. Interestingly, this current epidemic spreads locally via a line of sight surrogate – local TV reports and newspaper columns, and that the predominant reported early centers were all in English speaking countries.

The likelihood of “Morgellon’s” being an organic disease – bacterial, viral, or auto-immune – is vanishingly small. Physical symptoms like itching are almost universal, but kept below the horizon of awareness or concern, overwhelmed by the multiplicity of normal external stimuli, and suppressed through consciousness and other mechanisms. All one has to do is to concentrate on them or allow expression through depression or other causes, and they can magnify to frightening degrees. The physician sees nothing but the patient’s depression and concern, the patient rejects attempts at reassurance as disbelief or lack of understanding, accusations of professional neglect and conspiracies accumulate, reinforcing patient mistrust, and on it goes.

But criteria for diagnosis of emotional and psychological conditions are rarely physical or objective, so the CDC and Permanente experts will have severe credibility problems if they try to classify the problems as “functional” or somatiform. This “epidemic” is something best left on a lower key level, examined by physicians and other medical scientists in universities and academic institutions, not by government agencies, under pressure from members of Congress.

Now about that imaginary brake; a new radio commercial states that Mercedes Benz engineers recently experimented and determined that the passenger side “imaginary brake” that the passenger “uses” in certain urgent situations “does not work.” A clever ad, but also a real-life example of how imagination results in real organic responses, in this case motor rather than sensory – but quite real, nevertheless.

On to the prevention business. The CDC taking on this investigation and its probable unresolved ending a decade or more away, as with the NCCAM, gives legitimacy to the false idea that “there might be something there.” This unexpected consequence is likely to cause further spread of this imaginary disease and classic somatiform illness. All parties would benefit from reading Edward Shorter’s “From Paralysis to Fatigue.”

_____________________

Dr. Steven Novella has also recently written a blog entry on Morgellons over at NeuroLogica Blog.

Posted in: General, Neuroscience/Mental Health, Science and Medicine

Leave a Comment (39) ↓

39 thoughts on “Itching and the Imaginary Passenger Brake

  1. teeps29 says:

    There is a good piece on “Morgellons” in last Sunday’s Washington Post Magazine, available online. We hear from a lot of true believers, but the reporter remains agnostic. My favorite character is the family doctor who “offhandedly mentions aliens and conspiracy theories” and sells Morgellons “treatments” out of his office.

  2. Word.

    Here’s an article on the closely related “multiple chemical sensitivity syndrome”: “Sick of it All,” by Michael Fumento.

    See: http://www.reason.com/news/show/29943.html

  3. phren0logy says:

    “people who were feeling tired or depressed suddenly realized they could have a real disease”

    I agree with the thrust of your article but as a physician I find this comment offensive and uninformed. Depression is a real illness. I do agree, however, that it is not a skin disease caused by imaginary worms.

    Trying to make a psychosomatic complaint into an infectious disease is nonsense, but I think it’s irresponsible not to look a bit deeper into factors contributing to distress. If many of these patients suffer from underlying psychiatric disease then they should get appropriate treatment. None of this presumes that it would be a good idea to agree with them about this ill-informed explanation of their symptoms.

  4. David Gorski says:

    Here’s an article on the closely related “multiple chemical sensitivity syndrome”: “Sick of it All,” by Michael Fumento.

    With all due respect and at the risk of stirring up things, I have to say I’m not a big fan of Michael Fumento. From my perspective he’s a corporate shill and global warming denialist who also denies that secondhand smoke is a health hazard worthy of regulation and that heterosexual transmission of HIV is a problem. (In fact, he calls it a “myth.”) His “skepticism,” such as it is, virtually always comes down against scientific claims that threaten industry with the possibility of new health and safety regulations by the government (which is also why he likes to attack government regulatory bodies for “junk science” as well) or against science claims associated with liberal politics (such as anthropogenic global warming or the Lancet study that found such a huge number of excess deaths in Iraq since the U.S. invasion). As far as I can tell, I’ve never seen him attack a dubious scientific claim by a big corporation or a conservative politician (with the exception of antivaccination claims by Representative Dan Burton). He’s also well known among the medical, scientific, and skeptical blogospheres for misrepresenting scientific papers, with one example being this.

    Some other examples to support my opinion of Fumento:

    SourceWatch entry on Michael Fumento
    Michael Fumento: Fraud
    Fumento’s bird flu follies
    In defense of Revere
    Influenza: What If We Had a Sept. 11th Every Month and Nobody Cared?
    The call of the rake
    Fumento: a uniter, not a divider
    The expected Powerline smackdown
    Fumento fumes
    Adult Stem Cell Nonsense

    Fumento may be correct on a couple of issues, such as his strong attacks on antivaccinationist fearmongering, and he might be right about MCS as well, but he’s right in the same way that a stopped clock gives the correct time twice a day. He’s of the same ilk as Steve Milloy: A pseudoskeptic.

    I feel obligated to bring this up because articles by Fumento are often cited by people who find him offering an opinion that seems skeptical and scientific when they are not aware of his overall track record, which is not good. That’s why I caution people about citing articles by him in support of their position. He has a very definite pro-business, pro-right wing, pro-biotechnology, and anti-regulation bias that has led him in the past to twist science into unrecognizable (to experts, at least) pretzels.

  5. PalMD says:

    As physicians, we have sometimes failed to adequately address so-called psychosomatic problems. We see it every day, but the patients are often difficult, and the problems are often stubborn.

    By dismissing the patients’ complaints, we exacerbate their spiral into the woo-osphere, but by taking them on face value, we fail to help them.

    Of course, some are so delusional as to be beyond our help, but many are not.

    Unfortunately there are those who rise up to fill the gaps we leave with creamy, woo-filled goodness.

  6. Phrenology – you bring up an excellent point. Although in defense of Dr. Sampson, “feeling depressed” does not necessarily equate to suffering from clinical depression. Also, Dr. Sampson probably should have written “physical” disease, rather than “real” disease.

    But you bring up a point of complexity that I agree all physicians need to understand deeply. If a somatic symptom has it’s root in a psychiatric condition that does not mean that the patient is not sick, it could just mean that their illness is mental rather than somatic, and they deserve all the compassion and care afforded to any patient.

    Also (as I often need to point out to my residents and students) a patient may have psychogenic overlay of a true physical disease. The fact that they are embellishing or distorting their symptoms and presentation for psychological/psychiatric reasons does not mean that they do not also have an underlying physical disease.

    These various possibilities need to be considered and properly worked out for each individual patients.

    But it is critical for the profession, for individual physicians, and for the public to recognize that there are purely psychological and sociogenic syndromes, and this may be one. There is harm in missing that diagnosis also – such as unnecessary long term antibiotic treatments, or failure to treat an underlying depression.

  7. Simon says:

    Diagnostics is one of those interesting areas where scepticism has to alter its usual modus operandi. It is very easy to tell the snake oil salesman that the burden of proof lies on him to show that his claims are real, but a doctor cannot tell a patient that they have to convince him/her that their symptoms are real or, if you prefer, physical.

    Patients with vague symptoms are the bane of the doctors’ life, and put him or her in a very difficult position- itching and images of worms can psychosomatic- it can also be Onchocerciasis (to pull one itchy filarial disease out of a hat). As far as I am aware Onchocerciasis (AKA river blindness) has never been reported as a home grown case in the USA, and a patient would be extremely unlikely to actually see the worms even if it was, so the chances of this being the cause are practically zero. But if this debilitating, dangerous disease had infiltrated the States ramifications for public health (and indeed the quality of your epidemiological surveillance!) would be massive.

    In other words, avoiding my badly worded case study- the risks of attributing the symptoms to something as “simple” as delusion is a low risk but high consequence strategy. But now we go back to Dr. Novella’s last blog entry- would taking the patient’s delusion seriously only help fuel them, however inevitably negative the outcome of the tests?

    Thus there appears to be a Catch 22 situation- further investigation could exacerbate the condition, but lack of investigation carries a small, but extremely high consequence, risk of missing a new public health hazard. I would be interested to hear from any medics on this site who have encountered this problem and how they deal with it.

  8. pec says:

    “They claim that they found high incidence of antibodies to the bacterial agent of Lyme disease.”

    Well the important question seems to be whether or not that claim is true. If the Morgellon’s patients have been infected with Lyme bacteria, it is very possible that they were infected with parasites from the same tick bite.

    I am not saying the disease is real. I have no idea. But at least look at the scientific evidence before automatically assuming the patients are deluded.

    Any time people experience something that does not fit your existing knowledge, you assume they are lying or delusional.

  9. Simon says:

    “Any time people experience something that does not fit your existing knowledge, you assume they are lying or delusional.”

    Pec, the issue here is not that their symptoms are unusual and thus the medics (I assume they are who you are attacking with your “you”) do not believe it. Quite the opposite- delusional parasitosis is a recognised condition whose symptoms are evident here. Thus they are not reverting to a null-diagnosis for an infection by default, instead they appear to me to be making a positive diagnosis for a psychiatric condition based on the symptoms and the evidence presented to them.

    I do agree with you that these Borrelia antibodies are pretty central to the claims of the Morgellon’s proponents and they do indeed require further investigation. However, I have not been able to access the paper that makes this claim (Savely, V.R.; Leitao, M.M. & Stricker, R.B. (2006), “The mystery of Morgellons disease: Infection or delusion?”, Am J Clin Dermatol 7 (1): 1–5) to assess their evidence for myself. Does anyone else here subscribe?

  10. Joe says:

    Thanks for this.

  11. Psychotic_Chimp says:

    dearest pec (the object of my desire),

    “Any time people experience something that does not fit your existing knowledge, you assume they are lying or delusional.”

    You are so skilled at erecting straw men that i must ask you if you are now or have ever been a farmer or owner of a large garden that is constantly attacked by crows?

    If that is the case I can fully understand your indiscriminate use of of building straw men to ward off creatures (crows or ideas) that threaten to ravage the seeds (plant or ideas) that you have spend so long planting.

  12. qetzal says:

    Simon,

    That AmJClinDermatol paper is available here.

    However, the discussion on Borrelia is disappointing. It’s just two paragraphs, unreferenced and entirely anecdotal. Basically, the first author claims she has more than 80 Morgellons patients, and all but one test positive for Lyme borreliosis.

    If there’s any additional evidence for a link with Lyme, they don’t discuss it.

  13. PalMD says:

    Wow. This paper is a spectacular example of a horrible paper with many unfounded assertions. More later.

  14. Simon says:

    qetzal- Thank you for that, you are right the Borrelia evidence is about as unconvincing as you can get away with short of prefixing it with “My Dad said”.

    I did a degree in parasitology and consider myself to have a strong stomach, but the idea of having a tick attached to your flesh and growing on your blood I find horrible, and it makes me itchy just thinking about it. I find it very plausible that people who test positive for Borrelia, and therefore have had ticks in the past, will be paranoid about having parasites on, or under, their skin.

    But even saying that is far too kind a response to such a bad challenge. I would like to see some actual evidence for these bacteria before I bother to hypothesise further.

  15. MarkH says:

    I’m surprised the scratchy folks haven’t shown up to go crazy at you yet Steven. I wrote a post on the topic and got quite overrun.

    I love your expression “line of sight” transmission too. I called it folie a news, since the cases always are amplified by news coverage. The problem being demonstrated here isn’t that these people aren’t sick though. They are. Their symptoms are real. The problem is that the explanation is false. The appeal of having an explanation is very powerful and makes finding a solution an obsession (a ripe opportunity for quacks to exploit).

    Similarly in this vein you’ll see “chronic lyme”. People love an explanation, I tell ya. And if they’ve received that diagnosis for essentially these same symptoms, they’ll go just as crazy at you for saying there is no good evidence of it.

  16. pec says:

    Before the cause of Lyme disease was discovered, many of these patients were considered mentally ill or hypochondriacs. Fortunately there were some doctors who listened to their patients, who did not have the sort of contempt shown here. Lyme disease was studied and now it is partially understood.

    When a disease you don’t understand comes along, the temptation is to label the sufferers as crazy and/or stupid. It feels better than admitting your ignorance and helplessness.

  17. PalMD says:

    I don’t blame the patients…I blame the “professionals” who feed the delusions.

  18. David:

    Ouch (and “Uncle,” awready)! Regarding Fumento, his MCS article is the only one that I had read by him. I wasn’t aware of what you cited, but his MCS article is one of the best that I’d seen–assuming, of course, that its attributions are accurate, which I now realize may not be the case.

    On the other hand, I have also been skeptical of the claim that “secondhand smoke is a health hazard worthy of regulation.” The assertion, of course, has to do not only with science but with one’s view of the proper role of government in a free society. It also trips the alarm on my “exaggerating-data-for-political-gain” detection meter.

  19. daedalus2u says:

    A febrile illness is reported as a common triggering event for chronic fatigue syndrome.

    http://dx.doi.org/10.1016/S0022-3956(96)00050-7

    It is probably not the specific illness, but rather an immune system reaction that causes CFS.

    Essentially all of the symptoms of CFS can be explained by low NO. The most fundamental one, exercise intolerance is clearly due to insufficient mitochondria to sustain aerobic generation of ATP in muscle causing fatigue when glycolysis fails to provide enough either.

    http://www.chestjournal.org/cgi/content/abstract/102/6/1716

    If not enough mitochondria in muscle causes muscle fatigue, what does not enough mitochondria in the brain cause? What neurological disorders are characterized by low ATP and/or low metabolism in the brain? Just about all of them.

    NO is what triggers mitochondria biogenesis.

    http://www.pnas.org/cgi/content/full/101/47/16507

    I talk about some of these in the context of acute fevers resolving some of the symptoms of autism which I attribute to increased NO from iNOS.

    http://daedalus2u.blogspot.com/2008/01/resolution-of-asd-symptoms-with-fever.html

    (still working on a post on Morgellons)

  20. David Gorski says:

    On the other hand, I have also been skeptical of the claim that “secondhand smoke is a health hazard worthy of regulation.” The assertion, of course, has to do not only with science but with one’s view of the proper role of government in a free society. It also trips the alarm on my “exaggerating-data-for-political-gain” detection meter.

    Sorry, I get carried away when it comes to idiots like Fumento and Milloy.

    As for secondhand smoke, I’m not superstrong in favor of regulation, but I do favor it. The evidence is definitely strong that it modestly increases the rates of heart disease and lung cancer in workers exposed to it in the workplace. Whether that now well-characterized risk is worthy of regulation is a public health and political decision, but the convergence of evidence is not exaggerated, at least not by responsible scientists. True, there are activists who do exaggerate, and if you want to read a blog by someone who is dedicated to ranting about such exaggerations, namely Mark Siegel’s The Rest of the Story: Tobacco News Analysis and Commentary.

    Personally, I think Siegel goes off the deep end a bit. He claims to be the tobacco companies’ worst enemy and that he really believes that secondhand smoke is a serious health hazard, but reading his blog makes it hard for me to believe him when he says that. He’s seemingly never seen a study on secondhand smoke that he thought to be well-designed, at least if his blog is any indication, and he consorts with smokers’ rights activists. In fact, having read his blog on and off for a while, I really, really want to ask him: Given your continual rants about bad science and exaggerations in the service of secondhand smoke regulations, why is it exactly that you say you believe that secondhand smoke is a health hazard? What are the good studies that convinced you?

  21. “The appeal of having an explanation is very powerful and makes finding a solution an obsession (a ripe opportunity for quacks to exploit).”

    The quacks have already exploited the opportunity. They are selling silver supplements to cure Morgellons just the way that they’ve sold them to cure Lyme disease. And guess what dear doctors. I know of 2 confirmed cases of argyria in people who took silver to cure Lyme and have a still unconfirmed report of argyria in a person who took it to treat Morgellons.

    I am not an MD or a scientist, but several years ago I had lots of dealings with Lyme groups. They asked me to write articles for their newsletters. I came away with a very strong suspicion that due to the lack of a reliable diagnostic test that many of the people who believed that they had the illness and were very vocal in the patient groups did not. I suspected that they actually suffered from serious mental diseases. I also suspected that they harmed a lot of people including some who did have LD. They harmed them by convincing them that quack remedies really had worked for them and by making others far more fearful and obsessed with the illness than their situations actually warranted. They were forever finding “the cure”, but “the cure” actually always turned out to be serial cures. They would be certain that one had worked, then another and another. It never occured to them or their audience that if they were still sick and looking for cures that the “cures” they believed had worked previously and had promoted with fascinating anecdotes had actually failed miserably.

  22. BlazingDragon says:

    Ugh. On the one hand, I agree that diseases like these are often psychosomatic (the “line of sight spreading” idea is dead-on accurate in some cases). On the other hand, dismissing CFS so blandly makes me cringe (and a bit angry).

    I had a reasonably normal life until a bout with mono. I seemed to be getting over the mono, then boom, nothing has ever been the same. I felt horribly for 5 years before I even heard of “CFS,” so I had not been “infected by line of sight.” It was an MD who suggested CFS to me too. I did not imagine the sudden loss of ability to exercise (literally over the course of a few days, long before I’d even heard of CFS).

    My guess is that CFS has multiple causes and will need multiple treatments (based on the evidence of the cause of each type) and that a decent fraction of CFS cases will turn out to be entirely psychosomatic. But to dismiss it as entirely psychosomatic is careless and foolish.

    CFS is likely to have something to do with the immune system getting dys-regulated, but that’s just a hypothesis based on what I’ve read over the years. Because most researchers in CFS are either quacks with wild-ass theories or doctors who have a bias against finding ANY cause for CFS (other than psychosomatic), very little good research has been done on this condition.

    This attitude of dismissing complaints that don’t seem to have an obvious cause is a major contributor to making people susceptible to the wild claims of woo-based quacks.

    P.S. I heard about this somewhat gross “disease” about a year and a half ago. My two thoughts at the time were “I wonder if we’re dealing with a new organism that made a sudden leap into the human population” or “Wow, I wonder what’s going on in the heads of these people.” I have never “caught” it, even after hearing about it multiple times over the last year and a half or so.

  23. BlazingDragon says:

    Second hand smoke should be more heavily regulated for a simple reason: asthma. Whether it induces more cancer in non-smokers or not is hard to determine. That it can set off an asthma attack in an asthma sufferer is not. The arguments about the studies dictating whether regulation is necessary or not based on cancer statistics is somewhat immaterial when asthma is sitting there in plain sight like an 800-lb gorilla. I get enough crap blown in by the wind thanks to natural processes (tree pollen, mold, etc.) that causes me trouble with asthma that I don’t need someone else’s carelessness about where their exhaled smoke goes…

  24. Wallace Sampson says:

    Faithful readers: Thanks for your comments

    Summing up. I will not address the many tangential and tendential offshoots to this post, but clarify a few.
    Some commenters see in my post a denial of reality of the illness of somatic disorders like “delusional parasitosis” (an unfortunate name.) or like whatever is being called “Morgellon’s. Of course the symptoms are real to the person. That was not the reason for or the theme of the post.

    Of course people can feel fatigue during prolonged illness and disease recovery. (It took me 9-12 months to recover from major surgery and complications.) That has not much to do with somatization.

    I specifically used the terms illness and disease separately, in the same sense as they were distinguished decades ago – illness for what a person feels or perceives, and disease for what the physician sees and classifies. Use of scare quotes for “real” disease was also intentional.

    Next, what we now call somatization is real, as some pointed out, but also real to the physician, with recognizable characteristics, even to patients’ friends and relatives. I did not believe or state it was not real.
    A part of the disorder is the emotional reaction precipitated in others by actions and attitudes of the affected person. The lack of insight, casting of blame, and lack of ability to consider a functional mechanism alienate others .

    Forms of somatization today, such as MCS, CFS, most fibromyalgia, are the partly socially determined symptom complexes of what 100 years ago took the form of conversion (hysterical paralysis, blindness, etc..) The interaction between affected persons, the social environment and physician thinking and “style” has been studied by psychologists and sociologists and recorded by researchers from Charcot and Freud’s times through today.. The general theory states that people’s somatic focus changes to fit whichever syndromes physicians most likely regard as “real.” In other words, physicians and medical research terminology exude cues as to which symptoms may generate the most authenticity.

    That is at least close to the theme of social psychologists and psychiatrists and the historians who have recorded the field’s development. The post’s points were, that “Morgellon’s” is another form of somatization, that a typical social network has already been in process since the “founder’s” first description. It is becoming a political force with legislative supporters (Sen. Feinstein responding this time,) news media publicity, support and political groups, and a group of physicians who believe they have found an answer to the problem that has beleaguered the best minds for a century.

    We should be concentrating on something relatively new, that may explain more of the phenomenon. We are seeing in process, formation of a socio-medical phenomenon; a type of conscious contagion (line of sight, line of news.)
    We may also learn that politicized medicine through the Centers for Disease Control “and Prevention” is, by publicizing research in response to political pressure, offering yet another vehicle or fomite for dissemination (contagion.) That is not prevention.

    Do some really think that after 40 years of medical practice I would not be aware of a difference between disease and illness, or would not understand what a patient feels? The post was not about patient “management” but about a new somatic phenomenon, the politico-socio- misinterpretation of events, and the contributing and enabling roles of physicians and medical organizations. From which we could be learning something.
    Which brings up the last point. There is often a difference between how we perceive and act on social delusions on a social level and how we behave in our professional roles with individual patients who come to us for help. That problem is a continuing paradox, without solution by any rules that I am aware of. Same applies to cancer patients taking quack remedies, social vs. individual treatment of AIDS, how we “handle” abortions, executions, and wars; the social vs. individual matters of medical costs, and a host of other problems.

  25. jgawne says:

    I am not an MD, nor do I play one on TV. I am however a reasonaby smart guy with a number of MD’s in the family. I am a skeptic and pretty good at spotting junk science.

    However, I am very offended at your comments on CFS. I have witnessed this “problem” as you call it cripple my wife for the last 13 years. I know her, and this is not a psychosomatic thing. Her doctors agree. In fact we both assumed CFS was not real, until one of the most respected docs in the area gave the diagnosis.

    As I read more about it, I found that her PREVIOUS symptoms matched up uncannily with those considered to be the bulk of cases. She had no idea of this befpore hand, as I said we both dismissed the concept until the doc diagnosed it and I did research.

    You are wrong in that CFS does not affect other countries. It does. It’s just called Myalgic Encephelomyalitis in Commonwealth countries. It has een accepted as a mysterious issue in such backwards nations as the UK and Australia.

    Obviously you have dismissed everything written about this illness as junk. If you haqd actually looked into it you would have seen that there are patterns and symptoms beyond being tired.

    This does not mean that CFS is one specific “bug” or sickness. It is a diagnosis of last resort for a grouping of symtoms. In the last few years a group of those having been diagnosed with CFS have been found to have a blood pressure issue. They are now no longer diagnosed with CFS, but that does not mean we will not find other problems that casue the CFS symptoms.

    Testing on my wife does show abnormalities which coincide with the main CFS symptoms. Which are far more than being tired. The Docs look at the results and say there is a problem there, but they aren’t sure what it is.

    As to a bandwagon effect, all I can say is that, again, before the diagnosis both of us were skeptics. We remained so until looking into it. We quickly found a large group of people who DID NOT fit the classic symptoms who claimed to be effected. BUt they are mostly self diagnosed.

    If a number of elderly women suddenly decided they had cancer without a diagnosis, does that mean cancer does not exsist?

    I agree there is not a large body of good research on CFS. Mainly becasue people like you continue to laugh at it. Had someone called it “X” syndrone I suspect this would not have happened. Requests by the patient group to nrename the illness were rebuffed by NIH becasue they felt there had already been enough work on it that a name change would be confusing to fiuture researchers.

    Without going into detail about the suffering my wife (and I) have had oer the years, at the hands of poor doctors (which other Docs allow to practice even though their skills appear “questionable” , at the ands of insurance companies (the main one was found quilty of kicking ill folks off disability for no reason but to make a quota), and by friends who assume she is “just being lazy”… well, I really think you owe some folks an apology for perpetuating the myth and thus making it harder for those that DO have anillness that falls into this related cluster of symtoms.

    On the other hand it reminds me to be skeptical of the skeptoics. Obviously you did not do your homework on this issue (how could you miss the major UK studies?) it shows me to trust no one- especially this web site. Clearly opinion holds more sway than science here. Just what I had hoped you would be fighting against.

    In this one, sir, you are wrong.

  26. daedalus2u says:

    The reality of CFS has been demonstrated beyond any reasonable doubt. People who suffer from it have reduced exercise capacity and their perception of muscle pain correlates extremely well with MRS imaging of their muscles’ energy status at the time they report exhaustion. This was shown 15 years ago.

    http://www.ncbi.nlm.nih.gov/pubmed/1446478?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlus

    The same thing was shown in fibromyalgia 10 years ago.

    http://www.ncbi.nlm.nih.gov/pubmed/9506567?ordinalpos=33&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

    (The explanation they offer is wrong. The problem is good ATP regulation around a bad setpoint. That bad setpoint is likely mostly due to low NO levels.)

    Does every patient who claims to have CFS actually have it? That is unknown in that there are no easy instrumental diagnostic methods. However that is true for most neurological disorders. There is no test for schizophrenia, other than interview by a clinician. It was once true for all disorders. 200 years ago people didn’t die of a heart attack; they died of acute indigestion, a condition that modern medicine has miraculously rendered non-fatal.

    (Still working on my Morgellons post. It is getting big now that I understand the reason why itching skin is a common symptom of both cirrhosis and kidney failure. It is via the same mechanism (I think) that leads to itchy skin in Morgellons (but for different reasons.))

  27. Wallace Sampson says:

    Re: Jgawne:
    I cannot diagnose a patient not examined. J’s wife could have some other disease. But that is just unlikely based on what J.. presents. Personal docs’ diagnoses notwithstanding.

    The description of the syndrome is characteristic of somatization. Seen another way, what disease lasts a over decade without either improvement or decline, or a specific periodicity, or alteration of common blood or X ray tests? ? Rare to none.
    How many peole with the described syndrome are eventually discovered to have had another disorder? Rare to none.

    I did not state that CFS does not exist in other countries. In Uk it was myalgic neuroencephalitis and by other names. In Scandinavia, Icelandic disease, No. America early 20th century: neurasthenia, and late 20th century: CFS, MCS, and fbromyalgia, all sharing comon qualities. Those disoders were /are all recognized as somatization. In all countries.

    What I call attention to regarding “Morgellon’s” is something described before – epidemics of somatiform illness. There are multiple descriptions of clusters of people having same to similar symptoms such as described in CFS. They are precipitated via suggestion, and many people improve rapidly. Mass psychogenic illness is the consensus description of these episodic events.
    Second may be a newer concept, previously implied, not explicit. That is, spread by news organizations and other publicity. We may be seeing how somatization can be transmitted just as mass psychogenic illness spreads by line of sight.
    Third, a federal agency for disease prevention may be actually transmitting the disorder by legitimizing it through research grants, and publicizing it.

    Re: the research articles…The blood pressure changes found in CFS are not proved to be causative or disease-defining, as they are probably more consistent with or secondary to inactivity.
    And, cancer exists because it is reproducibly definable objectively, not because 100 women claim to have it. The argument given is backwards, and has nothing to do with my post.

    Re: Daedalus2u

    Daedalus is either arguing some other point (CFS exists) or is reinforcing mine.

    CFS is the term now given to a form of somatiform illness. It is an illness – a set of symptoms felt by the person; it is not a disease marked by physical signs or lab and X ray abnormalities. No organ system is found to be abnormal.

    The interesting metabolic findings of CFS affected people are strangely reminiscent of those possibly found in people in poor physical condition. The second paper’s authors almost stated that.
    When the researchers perform the tests with control patients who have been at bed rest and inactivity equal to the same extent as the CFS patients, and there is a significant difference, we can start talking disease.

    I hope the readers will stay on track and “get” the point of the post.
    To those who still must argue that CFS and related disorders are diseases and not somatiform illnesses, and to patients who deny their problems’ origins, allow me to drop the fomalities of physician behavior and to speak in language used here.
    You are wrong. Stop looking for information that fits your conceptions, and try to learn what is happening to you; how your life – the only one you may have – may slip away under a pall of unhappiness and contrariness, while disallowing entry to sources that may help you the most. There is hope if defenses relent, and none if they are maintained.

    WS

  28. BlazingDragon says:

    One problem with your “mass psychosis” argument for CFS. I have had the same symptoms for 20 years. I’ve had the same symptoms long before the Internet made these “diseases” spread like wildfire. I have had consistent symptoms regardless of what I have read for 20 years.

    My exercise intolerance developed suddenly, over the course of a week, while I was increasing my daily exercise. The de-conditioning of MY body is the result of feeling like crap when I exercise, even a little bit.

    I am sorry, but you are flat-out wrong to lump all CFS patients into a “somatiform” illness. I’m quite sure there are many lazy idiots who have jumped at the chance to justify their laziness, but there is a core of real disease going on here.

    Your attitude toward CFS is not tangential. It is the heart of one of the biggest problems with modern medicine, that patients with diseases that are hard to diagnose get treated like crap by many physicians.

    I’m sure that 30 years ago, people with the first cases of AIDS were shunned or mocked by their physicians, doubly so if they admitted they were gay, until they started dying. If one hasn’t found a cause for CFS, there are TWO possbilities: One, you have suggested, which is that there is no disease present and it is all “somatiform,” or two, there is an actual disease process but no one has found it yet. If it is a real disease with an organic cause, attitudes like yours will mean that there will be a huge delay in finding it (it’s funny how if one decides they know the result of an experiment before-hand, they usually find evidence to support their foregone conclusion).

    I’m not saying I have proof that CFS is a real disease. I am saying that your assertion that all cases of CFS are somatiform doesn’t have a lot of evidence outside of the opinions of a lot of doctors. Just because someone hasn’t found a cause for CFS doesn’t mean they might not find one in the future.

    I do know for an absolute fact that treating CFS with antidepressants and/or anti-anxiety drugs does not work (yes, I’m sure they work for people who truly have somatiform illness, but they don’t work for many people with CFS). I have had several bouts with depression over the years (due to a massive loss of function in daily life), and anti-depressants worked well to improve my mood. They never improved my exercise intolerance or any other symptom other than mood-related ones.

    You have fallen into the logical trap that you accuse so many CAM providers of having: Disease X works this way because I say it does. You can read CFS literature and find an interesting problem for study, or you can read it and find a bunch of people “infected” with a somatiform illness. The literature does not have any very good proof one way or the other. Your opinion of CFS does not take any exceptions into account and isn’t a very good explanation of most CFS cases.

    If you have any compassion, you will admit the possibility that you could be wrong about CFS and apologize. And please answer at least this point directly: How can I have “caught” CFS by line of sight if I had not heard of it in any form for 3-5 years after I first had symptoms?

  29. Wallace Sampson says:

    Blazing Dragon asks answers to questions about statements I did ot make and attitudes I do not possess. There are too many and too many repeated to continue answering. Some that I feel need emphasis follow.

    BZ’s first error is to assume that everything I have stated applies to him. I did not know BD when I wrote the piece – an apparent crucial piece of information some of you may have thought as well. I am presenting qualities that apply to the phenomenon of Morgellon’s and to the well described qualities of somatiform illnesses over time, not statements about BZ or his problem.

    Interestingly, however, BZ describes the same constancy of symptoms and long duration described in my summary. His symptoms antedate the Internet so he could not have learned through the Net. Neither could the millions of people said to have CFS in the 1980s after the Tahoe epidemic, or before that.

    BZ states he has had fatigue for 20 years, antedating recent descriptions. But formal descriptions date back 150 years to the time of Charcot. And somatiforrm’s predecessors date even further – hysterical behavior induced by Mesmer’s 1700s magnetism, the “dancing manias” in1300s Italy – attributed to the bite of a tarantula, and before that to odd behaviors of demonic possession and the plagues. Most cases have been sporadic, with exceptional local epidemics as above.

    The point is that the forms that somatiform symptoms take are partially determined by medical knowledge, social content and physician definitions and behaviors of the time. An argument not too distant from those BZ himself is making.

    BZ describes a sudden onset. In fact, so do many others with somatization.

    BZ feels that because he had not heard of “CFS” at the time of onset, he could not have caught it by line of sight..or news The line of sight phenomenon describes a specific form of somatiform illness, mass sociogenic illness, not sporadic CFS or other forms.

    BZ apparently considers those (me) with opinions about somatiform illness as having insulted him, and demands, of all things, an apology. he most that can be offered isa non-passing grade.
    BZ’s argument trails seem to me similar to those worried that UFOs cannot be atmospheric distortions, misinterpretations, and internally generated sensations, whereas most of them are.

    BZ’s and others’ problem also seems similar to students whose personal perceptions and experiences are at odds with conclusions made from objective observation and rational thought. The personal opinion usually is more strongly held than the intellectually derived thought. The situation also resembles that of people who deny evolution bringing creationist or anti-evolution arguments to class in hopes of reinforcing their pre-formed beliefs and defending them against intrusive opposing ones.

    In an atmosphere of ideological defensiveness instead of openness to learning, conversation abates. Thanks for reading.

    This last entry should have answered most readers’ questions. I have taken time to answer significant questions for future readers of the blog who might think there were no good answers for them. A recurrent problem.

    WS

  30. BlazingDragon says:

    Thank you for taking the time to address my statements, Dr. Sampson. You assume I’m some sort of UFO crank or other level of idiot. I work as a synthetic chemist. I do very well in my day job and I am well-respected among my friends for issues other than chemistry (politics, biology/medicine, and computers among others). I have been called to consult when a friend found out his friend had cancer. We had a long chat, I answered his questions about his friend’s cancer, and I turned out to be right on all the major aspects, even though the diagnosis was no more than “he has testicular cancer that has spread to some of his lymph nodes.”

    Your initial statement lumped ANY CFS suffer with somatiform illness. You are classifying ALL manifestations of CFS as somatiform. This is a logical fallacy. I’m quite sure (as I stated before and you did not address) that many lazy and/or unscrupulous people have jumped on the CFS bandwagon to justify their own laziness or “cheat” the system. This does not mean ALL CFS sufferers are lazy or cheaters. Neither you nor I have the evidence to prove beyond a reasonable doubt what causes most cases of CFS. You state you DO have proof, but what I’ve seen so far is your statement that you believe (quite strongly) that CFS is somatiform. Please send me links to medical journal articles, because I’m now quite curious to read what you base your conclusion on.

    You have made a big mistake in assuming I’m a crank. I’m not. I got this problem when my life had finally (after many years) gotten very good. I had been through a rotten relationship and had just found the person who is currently my wife. I had been through years of being in shape and out of shape and was getting back into shape when this happened (my girlfriend, later my wife, used to be a marathon runner and I was trying to get into better shape). I had every reason to be enjoying my life and no reason to have a new “disease” that nearly ruined my life. The CFS cost me a Ph.D. in chemistry (although having an MS has worked out to be better in the end).

    With organic synthesis, as with life, I learned a long time ago to NEVER assume you know everything. I get humbled about once a week by something that says “I didn’t think that was possible.” Yet I’m quite good at what I do. Every single “rule” in organic chemistry has at least one (sometimes many) exceptions. And organic chemistry is far more exacting and amenable to quantification than biology is.

    You also did not address how AIDS patients were first treated (until the started dying from easily curable diseases). I imagine the first people who were sick with AIDS (but not dead yet) were treated quite horribly by many physicians until they found a compassionate one. It took several years of intense effort to isolate HIV. CFS might be infectious, but there have been few efforts to find completely new organisms that might be causing it (a great number of failed attempts to correlate known infectious agents to CFS symptoms/severity). I’m not saying CFS IS infectious, but since it isn’t lethal like HIV, relatively little effort has been put into finding out whether a new-to-science organism could be causing it.

    I think I will end this discussion here. Please do list your references for CFS being 100% somatiform. All sarcasm aside, I do want to read them. But unless I read something earth-shattering (which is possible), you and I will just have to agree to disagree about this topic. I think your vehement belief that CFS is entirely somatiform is damaging to any of your patients who currently have it, but it’s just my opinion and it obviously isn’t going to change your mind.

  31. BlazingDragon says:

    One thought I had later. If I seem to be obnoxious, I apologize. You hit a deep, very raw nerve with your characterization of CFS. I think you are dead-wrong with your characterization of CFS, but looking back at my comments, I can see my disgust with physicians I have seen in the past (and their dismissive, obnoxious attitudes) creeping into my mental picture of you, Dr. Sampson. I realize it and I am publicly apologizing. I hope we can have constructive conversations in the future.

  32. apteryx says:

    It’s a fact that all humans “somatize” under stress, some more than others, and if you don’t have a mechanistic explanation or treatment for a person’s symptoms, offering them mental health support may be the best thing available. Trouble is, every disease could fall into this category until someone has found a mechanism. Ulcers were supposed to be stress-related, until it was found that H. pylori causes them in susceptible individuals. There are mitochondrial dysfunctions that cause long-term physical weakness; what would we have said about these in an era before mitochondria had been discovered? How do we know that some unknown agent or mechanism is not similarly responsible for some cases of CFS? And if we should deny even the possible existence of any condition for which there is not a diagnostic test as of Jan. 2008, then I presume MDs should also stop giving kids amphetamines for ADD, since nobody has managed to generate an objective means of diagnosing that putative condition yet?

    Another point is that if mental stress is really someone’s problem, he’s liable to get a lot more relief from an alternative practitioner’s tai chi, foot massages and chamomile tea than from Dr. Sampson’s demand that he admit he is both mentally diseased and “wrong,” or else his life will “slip away under a pall of unhappiness and contrariness…There is [no] hope if defenses … are maintained.” Really treating the patient as an equal partner in his own care there, Doctor.

  33. Obviously just because medicine doesn’t know why specific symptoms occur doesn’t mean that there isn’t a physical cause for them, and many people in the past have been told that “it’s all in your head” when in fact a physical cause was eventually discovered.

    However, there is another component involved that leads many laypeople to conclude that a person’s complaint does not have a physical cause. That is the behavior of the individuals who believe that they have a disease. While laypeople may not always have any evidence to show that they are correct or incorrect, society to a degree affords them the luxury of making a judgment, but it doesn’t afford the same luxury to employers or doctors anymore.

    That can lead to situations like a friend saying, “Oh, no Mary saw the TV show about the flu. She’ll be home in bed tomorrow with it”, or a daughter saying, “Don’t tell mom I put flea medicine on the dog. When she knows, she gets dizzy, can’t eat and has to go to bed. But when she doesn’t know, she is just fine.”

    Unfortuantely, especially in the Internet era people who erroneously believe they are ill are a very serious danger to themselves and others. Many actually cause real injury to themselves and others who believe their anecdotes about cures and treat themselves with dangerous remedies or get doctors to prescribe meds they shouldn’t be taking.

    I look forward to the day when society will be able to admit that part of being human includes sometimes worrying about being ill when you actually aren’t and that people will be able to accept it for just what it is without attaching a stigma to it.

  34. Robert Christ says:

    I’ve have had crippling CFS for 11 years and believe the symptoms are caused by mold exposure. I’ve moved dozens of times over the last ten years and saw different degrees of success and failure depending on how much mold the dwellings I stayed in had. (broad spectrum)
    I also have food reactivity issues and found by cooking (sterilizing) all my food I don’t react. So My hypothesis (not an unshakable belief) is that my immune system is trashed and over reacts to pathogens. Mold is simply a pathogen of opportunity. (I have to breath) as is the bacteria and mold on foods that (I also have to eat)

    It is really tragic that people suffer needlessly the treatment is simple mold avoidance. This can be verified through simple double blind tests. Mold reactivity is extremely easy to induce in an intolerant individual.

    As I stated mold is simply a pathogen of opportunity it probably didn’t cause this illness which is an area of controversy. My guess is a virus or immune suppression though chemical exposure or some mixture of the above working synergistically.

    Another thing, I had severe rectal itching, felt like some type of worm or bug crawling in my asshole. Usually when I would lay down it would start. I thought it was pin worms, scabies or body lice. Than one day I got the idea maybe it’s a fungus. Sure enough I blasted that area with tinactin and the itching and burning went away with a quickness.

    My thinking is that this disease is a chronic bacterial, fungal, viral maybe a combination of the above. It is probably very stealthy but if the theory is correct that means that we could treat it or cure it like we do with herpes and aids and tuberculosis.
    Robert Christ
    HSDO
    High School Drop Out

  35. daedalus2u says:

    The reason that people somaticize when they are under stress is because of the physiology that stress invokes. These are adaptive responses to better cope with and survive what ever caused the stress in the first place.

    If you are under stress because you are in a war zone or being chased by killer ants, it would be good if your body was more sensitive to telling you if it was injured so you could deal with it. If you increase the “gain” on the physiological processes that detect injury to 11, those systems will start to “detect” injuries that are not there. If you are under “real” stress, such as from being chased by a bear, the “gain” goes to zero, and you completely ignore injury and pain.

    At the physical endurance limit, during a near death physiological state such as is invoked when running from a bear where to be caught is certain death, small injuries and even large injuries must be ignored and disregarded if one is to escape and survive. Evolution has configured organisms to enter a euphoric state when under near death physiologic stress. I think that is the source of the euphoria in the manic state. I think that is also the source of the euphoria of the stimulant drugs of abuse, the source of the euphoria of solvent abuse, the source of the euphoria during drowning, the source of the euphoria in autoerotic asphyxiation.

    If organisms could easily enter that euphoric state they would do so and would risk death with no survival benefit. Evolution has configured organisms such that there is an aversive state between “normal” and the Euphoric Near Death State (ENDS makes a good acronym). I think that aversive state is what depression is, and is also what the physical symptoms commonly attributed to somaticization are. Aversive feelings your body is producing to try and get you to stop doing what ever it is that is invoking that physiological state.

    A major factor in regulating the physiologic responses to stress is the nitric oxide level. A high stress state is a low NO state. Anything that lowers NO levels is going to invoke this state to some extent. With NO being a major regulatory signaling molecule in many stress pathways, a lower basal NO level will increase the gain on all of these pathways.

    These are physiological survival features. They are not abnormal; they are good control around a bad control point.

  36. Joe G. says:

    Also (as I often need to point out to my residents and students) a patient may have psychogenic overlay of a true physical disease. The fact that they are embellishing or distorting their symptoms and presentation for psychological/psychiatric reasons does not mean that they do not also have an underlying physical disease.

    Thanks for this, Steven. I think it adds some nuance to the conversation. Sometimes both patients and doctors tend to the all or nothing approach in these medical/psychiatric situations (“it’s all real and not a mental disorder!” vs “it’s all in your head”). Frankly, I think this post comes across more of the latter in the spectrum of things.

    I was one of those folks diagnosed with Chronic Fatigue Syndrome during the late 1980′s. Let’s just say I had something wrong with me (temperature around 100, extreme fatigue, low T-4 cell count, thrush and yeast infections on my skin, weight loss, chills, all of which resulted in my being on disability for about four months, etc.). Initially, the doctor thought it was Epstein Barr, but when the symptoms persisted for several months, she sent me to an infectious disease specialist. Because I’m gay, they thought for sure that the infections (thrush, yeast, and low T-4 cell count near 250) was due to HIV. Well, every test came back negative. They ruled out Lyme’s, cancer, you name it. They finally placed me in the “Chronic Fatigue Syndrome” category.

    I thought I had it for many years. But, to make a long story short, I finally got treated for an anxiety disorder. When this was properly treated, I felt substantially better, the best I had felt in years.

    I now believe I had some sort of infection (probably Epstein Barr) that lasted on the lengthier end of such things; and then I developed a serious anxiety problem (which have tended to run in my family tree across generations) in the meantime. I slowly got better from the infection, but the addition of the anxiety symptoms only complicated how much I actually felt better given how anxiety can cause all sorts of interesting body sensations that are akin to milder symptoms of an infection. :)

    All of this to write that sometimes these “mystery” diseases or “disorders” are not always so black and white, at least in my case. I clearly had something going on with some sort of infection, at least initially, that then got over-laid with an untreated anxiety disorder. So your point is appreciated and well taken.

  37. al says:

    My God, you Guys are Doctors????
    Why didnt you just take up eugenics insted?
    I’m not going to bother telling you how sore, how disfiguring and how overcome with despair sufferers are. But

    I have a little poem, maybe you could take it to your nearest NWO centre, or hang it up in one of your underground bases…I jest.

    Oh Smily, Tall I’ve missed you
    All the while Ive been banned
    But while I was gone
    Ive been watching your hand
    What truly astounds me
    Of this I’m amazed
    How you carry such crap
    Page, after page
    From where does it come?
    This passion to type
    Day after day
    of vacuuous hype…
    How do you do it?
    I really must know
    U must feel like a prophet
    Its on with the show
    Or do you live on the profits
    Of your boss, Mr GMO?
    As for me, well I’m back
    Till you ban me again
    Give me the sack
    I glow in the dark
    I emite active spark
    My mind is alive
    in its ELF hive
    My bugs come out fine
    From ears eyes and mouth
    I chase them with mortien
    And watch em go south
    But I know its a falsehood
    A delusion for sure
    Coz you guys have told me
    and your words are law
    My sores, well, I like em
    Open and raw
    Just like a tattoo
    you buy from the store
    The Pain, well I love that
    How it builds up and darts
    To think once amused
    By smelling my farts
    Should I go on and
    tell you more
    about shitting and spewing
    all over the floor
    How about the rattle
    from in my lungs
    or the choke from my throat
    as the damage is done
    Lets talk about stools
    since I opened the door
    Loose, ground like coffee
    Lets go there no more
    But then theres the blood
    From under the sore
    Thick just like treacle
    But wait, yes theres more
    The rattle of gristle
    As I outstretch my arm
    The fibre extending
    from shoulder to palm
    What else can I tell you
    Without starting to lie?
    A motle fiber out of my eye?
    He said,”It just moved”
    Said I “Are you sure?”
    He pulled it out swiftly
    It was there no more
    So now to the battle
    For truth and the light
    Its the nano attractants
    That we must fight.
    Go back to nature
    And live with all might
    So ye old mogwatch folk
    You are as in touch
    As a pig in a poke.

  38. Zao says:

    I am not going to get into a debate with you, Mr Sampson, because frankly I don’t think you are worth the trouble, your view is clearly a very ideological and immutable one, you see everything about these disorders through the somatisation lens.

    Suffice it to say I am very, very familiar with the full range of technical and historical literature of CFS, a lot more so than you it would seem. To put it as politely as I can, your ignorance about these matters is just stunning, you have no idea what you are talking about.

    For you to present the somatisation hypothesis as a done deal, with little dissent within the field, is so wrong that I am forced to consider deliberate misrepresentation on your part, or at the very least, gross failure to do due diligence in your background research, coupled with a wilful, ideologically driven blindness.

    A few decades ago, when I was first starting on my career in medical science, I worked with a very gifted and humble doctor, who gave me the single best piece of general advice about med sci I have yet received:

    “Be most most wary of those who appoint themselves the skeptical standard bearers, they are often the ones who do the most damage, in part because they are the ones whose minds are hardest to change.”

    Your age and technical experience notwithstanding, you still have an awful lot to learn about the world, and the limits to your ability to understand it.

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