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Fake diseases, false compassion

Hi,  everybody!  I’m PalMD (although my byline says differently), and you may remember me from such other blogs as WhiteCoat Underground and denialism. The folks around here were kind enough to give me a regular gig dispensing my brand of medical information transfer, and I’m going to start out with a basic question: what is a disease?

Human beings have some pretty powerful pattern-recognition software—so powerful that it can over-perceive patterns, sometimes causing us to confuse randomness for order.  This impacts all aspects of human thought, including medicine.

In the realm of medicine, we define disease as alterations in physiology, anatomy, biochemistry, etc. that causes significant discomfort, disability, or increased risk for same.  OK, really, I sort of cobbled that together, but you get the idea — a disease is a definable alteration in normal function.  A corollary to this is that to define a disease, we must know something about what is normal (a discussion for another time).  A related term is syndrome, which we usually define as  “a set of signs or a series of events occurring together that often point to a single disease or condition as the cause.”  What this effectively means is that we use the word “syndrome” to indicate a set of abnormal findings without a clear cause, and “disease” to indicate the abnormal findings with a putative cause.

(All this verbosity is leading somewhere—I promise.)

“Syndrome” is sometimes a useful place-holder term for a nascent disease.  Sometimes, however, a set of signs and symptoms is simply coincidence that we erroneously recognize as a pattern.

In popular culture there’s a lot of talk about “overmedicalization”, that is, calling things abnormal that are simply slight variations in the wide range of human health.   You’ll find people who argue that treating ADHD with medications is tantamount to abuse (and lost in the hysteria is the real possibility that we are over-medicating some kids). You’ll also find groups that argue that deafness or autism are simply “other”, but not “abnormal” as such.  This, of course, is wrong.  While a deaf or autistic person is just as valuable as a “normal”, and may have just as much to contribute to society, they are very far from normal human health.

And now you have the proper background to approach the problem of fake diseases.

Now, by “fake diseases” I very emphatically do not mean people who are faking being ill.  Yes, there are those who “fake it” but that’s also a story for another time.  By fake disease, I mean patterns of signs and symptoms that are just that—patterns.  They may or may not constitute an actual disease or syndrome, but someone, somewhere, has decided to unscientifically attribute a patient’s problems to the wrong disease or to a disease that doesn’t exist.

Examples?  You want examples?

Fine.

Take “chronic Lyme disease“.  There really isn’t any such thing. (And more operationally, there is no evidence treating people so labeled with antibiotics improves their health.)

Sure, Lyme disease is a relatively common (in some regions) tick-borne disease.  Lyme disease is pretty cool (unless you have it), and represents a somewhat newly recognized entity.  Further, it can have late-onset symptoms which are protean, including arthritis, heart problems, and neurologic disease.  It is these qualities—the ability to cause late-onset symptoms, and the diversity of these symptoms—that attracts so much quackery.  You see, we all have friends, family members, or patients who have lots of, well, tsouris, that is multiple symptoms and complaints without a unifying cause.  So, if you live in an area where Lyme disease is common, and you have lots of symptoms that your doctor cannot explain, you may be tempted to find a doctor who will give you an answer—any answer—to explain why you feel lousy.  Conversely, as a physician, you may feel powerless to help the person with fatigue, “brain fog”, aches and pains, etc. who doesn’t appear to have an underlying disease.  A good doctor would see the patient frequently, provide emotional support, symptom relief, and help them avoid too many invasive diagnostic tests.  A less skillful (or less scrupulous) doctor might approach things differently.

In the area of chronic Lyme disease, there are all manner of Lyme “specialists” who dispense unproven and dangerous treatments, the most common of which is long-term antibiotic therapy. This treatment can be very lucrative, and quacks have encouraged their pigeons to form advocacy groups–cults, really–that reinforce their false beliefs, encourage a sense of persecution, and continue to feed the coffers of crooked and misguided practitioners.

Another interesting fake disease is morgellons syndrome.  This one is a bit different than chronic Lyme in that it isn’t the inappropriate expansion of a real disease, but a collection of unrelated signs and symptoms that has attracted  a great deal of crankery, and no real science.  There are a few “experts” out there who have no evidence of an etiology, but dispense “treatments”.  Many of these practitioners aren’t even doctors, which is telling.   Sufferers will claim to have fibers or parasites emerging from their skin, and eschew any rational explanation, preferring to believe that their symptoms represent some strange new  parasitic disease (that happens to bear a strong resemblance to a known disorder, “delusions of parasitosis”.)

One thing many fake diseases have in common is the lack of objective evidence of a cause.  For example, in chronic Lyme disease, advocates, when questioned about how a patient can have Lyme without any evidence for an infection with the organism have two responses: first, they will claim that a person has a case of “sero-negative” Lyme disease, meaning that the person has an infection for which not only is objective evidence not present, but cannot be present.  Second,  the lack of evidence of the disease is sometimes seen, bizarrely, as confirmation of its existence.

But once again, I’ve digressed.  We started out trying to answer the question, “what is a disease.”  We have a definition, but we need to “operationalize” it.  A disease or syndrome, for it to be a valid entity, must be, like a scientific hypothesis, falsifiable, that is, there must be a way to show that a person doesn’t have the disease.  In the case of chronic Lyme, even negative  blood tests won’t disprove the illness for true believers.  For morgellons, the less evidence there is for a true disease, the more strongly believers adhere to the idea that all of medical science is against them.

Fake diseases lead to a number of problems.  First is that giving a diverse set of symptoms a false moniker may distract from looking for the real cause of the symptoms.  Second, fake diseases attract fake treatments—they are quack magnets.  Those who diagnose and treat fake diseases are never well-respected, well-published researchers and practitioners—they are always “mavericks” who are bucking “the system”.

When confronted with a diagnostic conundrum, there are some doctors who abandon science in the name of money or compassion.  They are wrong to do so for either reason.    There are those who give a fake diagnosis in order to sell a fake cure. These are the least compassionate sort of criminal. But some are acting out of a sort of compassion.  However, giving someone a fake diagnosis may seem compassionate, in that you acknowledge their pain, but it leads to all manner of bad things.

When it comes to fake diseases, compassion is “the big lie”.  Science is hard.  Medicine is hard.  It’s hard to tell someone in a compassionate way, “you have advanced pancreatic cancer and it’s going to kill you quickly no matter what we do.”  It’s hard to tell someone, “you don’t really have a disease as such, but you are clearly uncomfortable and I will do all I can to help you feel better.”  It’s hard to tell people what they don’t want to hear.  But that’s our job, as physicians.  We tell people what they don’t want to hear, and make it more palatable by offering our help and compassion.  Compassion is not simply telling someone what they want to hear.

When I was a medical student, we were often confronted on rounds with very difficult questions.  This questioning process, known as “pimping” involved a senior physician asking progressively harder questions to everyone on the team until we ran out of answers.  One thing we learned very quickly was that “I don’t know” was not a good answer.  A better answer was, “I don’t know, but I’ll find out.”  The worst possible answer, though, was the lie.  This is the compassion behind fake diseases and the quacks that associate with them—the lie of,  “I don’t know what’s wrong, but I’ll make something up.”

People who believe they have fake diseases are victims in a way other patients never can be.  Not only are they suffering, not only do people not believe them, but those that do believe them do them the worst disservice—they feed their false beliefs,  distract from real treatments, and offer to sell them false compassion.  These quacks should be ashamed.  But of course, they have no shame.

Posted in: Science and Medicine

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62 thoughts on “Fake diseases, false compassion

  1. pec says:

    How can you possibly be sure that chronic Lyme disease is fake?

  2. All this verbosity is leading somewhere—I promise.

    Ha! You can’t beat me or Kimball for verbosity. :-)

    Welcome aboard, and good first post!

  3. Peter Lipson says:

    pec said, unsurprisingly, “How can you possibly be sure that chronic Lyme disease is fake?”

    How can I be sure hysteria isn’t due to a wandering uterus? Can you prove it to me beyond any doubt at all? What is the nature of knowledge anyway? Is inductive reasoning valid? What if the constants in our universe aren’t actually constant? Why are burritos so good?

  4. nwtk2007 says:

    I have made that point same more than a few times.

  5. I feel badly for the folks who suffer from delusional parasitosis, and seeing the Morgellons’ discussion on denialism blog only reinforces that compassion. I wonder how many of those folks could be helped if only they would allow themselves to be treated for dp rather than with whatever antivirals the Morgellons quacks are dishing out to them.

  6. Joe says:

    Peter, I hate to argue semantics or philosophy. However, isn’t it more accurate to speak of fake diagnoses rather than fake diseases? The patients (true malingers aside) are ill; they just reject conventional, psychiatric diagnoses (or are true mysteries).

    You made the point that you recognize the patients are unhappy and you are willing to try to help them. I got that.

  7. Kerry Maxwell says:

    I’d be interested in how you feel this applies to mental illness. I’m not a hardcore mental illness denialist, but it certainly seems your working definition of *fake illness* would have broad application to *diseases of the mind*.

  8. Peter Lipson says:

    Im not really sure how that follows. Most mental illnesses have useful operational definitions, and metrics for evaluating severity and response to treatment.

  9. overshoot says:

    How can you possibly be sure that chronic Lyme disease is fake?

    Perhaps it would be helpful if you could define “chronic Lyme disease” in a way that lets us tell if someone has it or not with high confidence. That is, sufficient to distinguish it from someone who has read about it and has become sincerely deluded that they have it.

    For instance, we can reliably tell if someone has ruptured an anterior cruciate ligament by some pretty simple tests that distinguish it from the usual run of wobbly-from-exhaustion knees.

    Please provide us with an operational definition of CLD that allows the same distinction.

  10. Peter Lipson says:

    Aye, there’s the rub. Anything can be CLD!

    I did give a link to a good article, but the link is broken…here it is:

    http://content.nejm.org/cgi/content/full/357/14/1422

  11. daedalus2u says:

    As long as you are going to post about Morgellons again, I will post a link to my take on it.

    http://daedalus2u.blogspot.com/2008/02/morgellons-disease-hallucinatory.html

    I see it more as a hallucination than as a delusion. More like phantom limb pain which isn’t called delusional limb pain. The feelings of phantom limb pain are real; they are just not coming from an actual limb. I think the feelings of creepy crawly things in the skin are real; they are just not coming from actual creepy crawly things in the skin.

    I see it as being due to the same mechanism that cocaine and amphetamine abuse cause the hallucination of bugs crawling inside the skin. Chronic low NO in the skin puts it under metabolic stress which lowers NO levels still more. That increases the sensitivity of mast cells so they degranulate with no provocation. That itching is (I think) the same mechanism as the itching in primary biliary cirrhosis and kidney failure, severe metabolic stress causing low NO in the skin.

    I suspect that SSRIs would help because they change the setpoint of serotonin uptake and release. Serotonin is a major factor in what causes mast cells to degranulate. Improve serotonin regulation in the skin, and you improve mast cell regulation. If that is what is causing your skin to itch, it will then get better. SSRIs are recognized as effective for the itch associated with primary biliary cirrhosis (the mechanism I suggest has not been suggested by others to my knowledge).

    As I see it, it isn’t in their “head”, the source of the feelings is from the skin.

  12. daedalus2u says:

    There is another connection to low NO which I haven’t written up yet. Lyme disease is an intracellular infection, an infection that occurs inside of cells. Most of the actual infectious diseases that have been suggested to progress into what is called Morgellons are also infections that occur inside of cells. TB is another, O fever, and also other mycoplasm infections. Mycoplasm infections are commonly seen in patients with chronic fatigue syndrome.

    It turns out that for the body to get rid of things like mycoplasm and other infections inside of cells, that the cells have to crank-up the internal cell clean-up process known as autophagy. This is the process by which cells clear out all the “junk” and damaged material that has accumulated. This is how damaged mitochondria get disposed of. If you don’t have “enough” autophagy going on, stuff accumulates, like damaged mitochondria, lipofuscin, protein aggregates and bacteria that shouldn’t be there.

    One of the things that turns up autophagy is the ATP level. The ATP level in turn is regulated by NO. Low NO means you will have lower levels of autophagy and it will take longer to clear damaged proteins (as in Alzheimer’s and other amyloidoses) and also infections. NO also triggers mitochondria biogenesis, so with low NO you don’t have enough mitochondria, and so you don’t have enough ATP and so you feel “fatigued”.

  13. adiemusfree says:

    Isn’t this a pretty old discussion in some ways? I think you’re looking at the distinction between ‘disease’ and ‘disability’…
    What I mean is, disease may be about detectable dysfunction (but that depends on the level of technology you have available), but what really matters is the impact on the person – or in other words, the disability associated with it.
    Let me give you an example: my field of chronic pain has no means for identifying whether pain is present or not – we have to rely on self report (or pain behaviour). We cannot tell whether someone’s pain is directly related to detectable dysfunction (think of low back pain that may, or may not, be associated with degenerative changes to the spinal vertebrae) – what we can tell is whether the person is reporting having problems with it.

    Moving beyond diagnosis is important: it means looking not just at the presence or absence of disease, but into the mechanisms that are influencing why this person is presenting in this way at thisthis time.

    Responding to someone’s distress by deliberately or inadvertently suggesting that they are faking/imagining/weak/a non-coper won’t help. Neither will providing the person with a ‘quick fix’ based on limited if any evidence.
    What might work is helping the person cope better with his or her situation, developing active strategies to get on with life despite the symptoms.

    Perhaps as the movie says ‘This is as good as it gets’?

    http://healthskills.wordpress.com

  14. wintermute says:

    In the realm of medicine, we define disease as alterations in physiology, anatomy, biochemistry, etc. that causes significant discomfort, disability, or increased risk for same. OK, really, I sort of cobbled that together, but you get the idea — a disease is a definable alteration in normal function. A corollary to this is that to define a disease, we must know something about what is normal (a discussion for another time). A related term is syndrome, which we usually define as “a set of signs or a series of events occurring together that often point to a single disease or condition as the cause.” What this effectively means is that we use the word “syndrome” to indicate a set of abnormal findings without a clear cause, and “disease” to indicate the abnormal findings with a putative cause.

    Does that mean that something like “broken leg” would count as a disease? I always kind of assumed that disease = infection (plus some other related stuff), and was distinct from injuries, but I’ve never really thought about it…

  15. Niels says:

    >Examples? You want examples?
    >
    >Fine.
    >
    >Take “chronic Lyme disease“. There really isn’t any such thing.
    >(And more operationally, there is no evidence treating
    > people so labeled with antibiotics improves their health.)

    Since this is a “science based medicine” blog, please note that your first example is completely wrong-headed. It is in fact disproved by one of the first large-scale studies on “chronic lyme” and long-term antibiotic treatment. This study came from a premier medical university: http://www.cumc.columbia.edu/news/press_releases/fallon_lyme_center.html http://www.ilads.org/files/Columbia_Study_Press_Release.pdf
    http://www.medicalnewstoday.com/articles/85278.php

    Please consider a review of the literature before making completely incorrect statements:

    Columbia University Medical Center Leads First Placebo-Controlled
    Study of Cognitive Impairment Due to Chronic Lyme Disease
    Findings Show Severe Physical Dysfunction Among Patients & Benefit of
    Repeat IV Antibiotic Therapy to Provide Long-Term Symptom Relief
    NEW YORK – Findings from the first placebo-controlled study of chronic cognitive impairment after
    treated Lyme disease (also known as chronic Lyme encephalopathy) demonstrate that patients report
    moderate cognitive impairment, physical dysfunction comparable to patients with congestive heart
    failure, and fatigue comparable to patients with multiple sclerosis. In the study, repeated intravenous
    (IV) antibiotic therapy was shown to be effective in treating cognitive dysfunction and the debilitating
    pain, fatigue and physical dysfunction associated with this disease.
    The study, titled “A Randomized, Placebo-Controlled Trial of Repeated IV Antibiotic Therapy for
    Lyme Encephalopathy,” will be published on-line by the journal Neurology on Oct. 10, 2007. The
    study was led by Principal Investigator Brian Fallon, M.D., M.P.H., director of the recently established
    Lyme and Tick-borne Disease Research Center at Columbia University Medical Center
    (http://www.cumc.columbia.edu/news/press_releases/fallon_lyme_center.html). The research was
    conducted jointly at the Columbia University Medical Center and New York State Psychiatric Institute
    and was funded by the National Institute of Neurological Disorders and Stroke (NINDS).
    “These findings replicate results from a prior placebo-controlled trial of post-Lyme fatigue, which
    found positive treatment results from repeated antibiotic therapy. They also replicate the degree of
    physical impairment results demonstrated in another prior study of chronic Lyme disease,” said Dr.
    Fallon (*see citations below). “The door should be left open for physicians to prescribe medications as
    warranted, after a careful discussion with the patient of the potential risks and benefits.”
    Dr. Fallon and his research team identified patients with cognitive problems that developed after being
    diagnosed with Lyme disease and which persisted or relapsed despite prior treatment, in order to
    determine whether patients who have already received the “standard” course of antibiotic treatment
    (three weeks of IV antibiotic therapy), would benefit from an additional 10 weeks of antibiotic therapy.
    They also set out to determine whether patients relapse when taken off antibiotics or whether the
    alleviation of symptoms is sustained or enhanced with time.
    Study participants (57 subjects: 37 patients with a history of Lyme disease and 20 controls) were
    divided into three subject groups: patients with a history of treated Lyme disease who were
    randomized to IV treatment with an antibiotic called ceftriaxone for 10 weeks; patients with a history
    of treated Lyme disease who were randomized to IV placebo for 10 weeks; and, healthy controls who
    were tested at the same time points as the patients to help to control for the practice effect on
    neuropsychological testing. All patients had to meet criteria for memory impairment at the start of the
    study and they were also required to have a positive IgG Western blot for Lyme disease at study entry.
    Key findings from the Neurology paper are as follows:
    Cognition
     There was significantly greater improvement in cognition in the antibiotic treated sample at the
    primary end point for efficacy (week 12).
     When patients were retested three months after antibiotic treatment, the initial gains in cognition
    for the ceftriaxone-randomized sample were no longer present.
     Patients lose their cognitive improvement when IV antibiotic therapy is stopped.
    Pain, Fatigue and Physical Dysfunction
     Among patients with greater severity at the start of the study, those randomized to ceftriaxone had
    more significant symptom relief of pain, fatigue, and physical dysfunction at week 12, as compared
    to those patients who did not receive ceftriaxone.
     Patients initially randomized to IV ceftriaxone who had greater severity of symptoms at baseline
    continued to show reduced pain and improved physical functioning at week 24. Improvement in
    fatigue continued, but was no longer statistically different from placebo at week 24.
     Repeated IV antibiotic therapy is effective in improving cognition, and among the more impaired,
    in improving pain, fatigue, and physical dysfunction.
    Safety
     18.9 percent of the 37 patients had serious adverse effects associated with either the IV line or a
    reaction to the antibiotic itself. Although all fully recovered, IV antibiotic therapy has the potential
    for serious risks, such as systemic infection, thrombus formation, or allergic reactions.
    Clinical Recommendations
     Repeated IV antibiotic therapy should be considered a valuable option with long-term benefit for
    managing the disabling symptoms associated with chronic Lyme disease.
     Given the risks and benefits associated with IV antibiotic therapy, physicians and patients need to
    have a thoughtful discussion prior to initiating treatment.
    *Citations from Recently Published Research
     The percentage of patients with meaningful improvement in fatigue noted at six months in this
    Neurology study (66.7 percent for patients treated with ceftriaxone vs. 25 percent for placebo) was
    comparable to the improvement in fatigue noted after repeated IV ceftriaxone therapy in a prior
    placebo controlled study (64 percent for drug vs. 18.5 percent for placebo) (Krupp et al.,
    Neurology, 2003).
     The degree of physical impairment (comparable to congestive heart failure) was comparable to the
    impairment noted in another chronic Lyme study (Klempner et al., NEJM, 2001).
    “Future research needs to focus on identifying a treatment approach that either allows not only for
    acute efficacy, but also long-term cognitive improvement; or, a treatment that could be given after the
    IV antibiotic therapy that would allow for sustained or enhanced cognitive improvement over time.
    Our Lyme and Tick-borne Disease Research Center continues to work towards finding these
    solutions,” said Dr. Fallon. “The most important lesson of this study is that physicians and patients
    need to collaborate openly to design an individual treatment plan to manage the long-term and
    complex suffering from symptoms of chronic Lyme disease.”

  16. Harriet Hall says:

    Niels cites a study that is falsely reported as the first placebo-controlled study of antibiotics for this condition and that comes from a group that is highly motivated to validate chronic Lyme as a disease. It must be put into perspective with other studies that not only show no benefit of antibiotic treatment but show no evidence of cognitive impairment in these patients.

    “Patients with post-treatment chronic Lyme disease who have symptoms but show no evidence of persisting Borrelia infection do not show objective evidence of cognitive impairment. Additional antibiotic therapy was not more beneficial than administering placebo.” http://www.ncbi.nlm.nih.gov/pubmed/12821733?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

    New England Journal study: “in these two trials, treatment with intravenous and oral antibiotics for 90 days did not improve symptoms more than placebo.”
    http://www.ncbi.nlm.nih.gov/pubmed/11450676?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=1&log$=relatedarticles&logdbfrom=pubmed

    In another study “There were no significant differences in the results of neurocognitive testing among the three treatment groups and a separate control group without Lyme disease.” http://www.ncbi.nlm.nih.gov/pubmed/12729423?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=1&log$=relatedarticles&logdbfrom=pubmed

    Even studies purporting to show benefit from antibiotics have failed to show long-term benefit.

    When Dr. Lipson said there was no evidence, he meant there was no credible evidence. On this blog we are trying to show that just finding something you can classify as “evidence” does not constitute good science. Even quacks claim to have “evidence,” usually in the form of testimonials.

  17. Peter Lipson says:

    We grow a lot of cherries around here. There are two ways to harvest them. One is to take a machine called a “shaker” and literally shake the entire tree. All of the ripe cherries will fall to the tarp below to be collected. They can later be evaluated for quality.

    The other way is to climb a ladder or cherry-picker, and chose only the cherries that please you.

    The first way allows you to evaluate as many cherries as possible for good quality fruit. It also allows you to survey the entire tree’s output to see how the quality generally is.

    The latter way allows you to pick the fruit you like, but gives you no insight into the health of the tree or the crop.

  18. Niels says:

    “Harriet Hall”/SkepDoc says:
    > Niels cites a study that is falsely reported as the first
    > placebo-controlled study of antibiotics for this condition

    It is not falsely reported as “the first placebo-controlled
    study”. It is the first LONG TERM PLACEBO-CONTROLLED
    STUDY. The reason for this might be too subtle for the
    ignorant and the skeptical; easy to miss if one is dead-set
    on spouting misinformation as “Harriet Hall/SkepDoc” and
    “Peter Lipson/PalMD” are doing with regards to
    Lyme/Morgellons disease.

    Prior, the FDA blocked long-term antibiotic studies, as the
    FDA is in the pocket of big-pharma, who is happy to push
    extremely dangerous palliative/psychotropic solutions to
    the infectious and post-infectious sequelae of borrelial
    infection — and suppress proper diagnosis and treatment
    with long-term antibiotics. The Fallon study is the first
    to use long-term IV ceftriaxone/rocephin — where long-term
    is on the order of three times longer than the study that
    SkepDoc says predates the fallon study.

    The study SkepDoc quoted is in no way similar and has long
    been used as a posterchild of the lyme-denialists — it is
    called “the Klempner study.” It should be noted that the
    same people involved in this study were directly implicated
    in the fraudulent IDSA lyme guidelines which by lawsuit
    settlement must be revised. Lyme-denialism has been these
    doctors longstanding position.

    The Klempner study uses two different antibiotics
    sequentially because of the FDA/big-pharma blockage over
    long-term IV-antibiotic use for lyme studies involving
    placebo as controls. They also use dosages far lower than
    those found therapeutic by Lyme doctors — again probably
    in obeisance to the FDA’s ridiculous fear of “overusing
    antibiotics.” The FDA’s proscriptions on studies involving
    long-term antibiotics exist despite common medical practice
    to do so in treating Tuberculosis, Leprosy and Q-Fever.

    In terms of experimental limitations, the issue is that a
    placebo-long-term IV has a very great chance of getting
    infected — especially because it is not running
    concentrated antibiotic through it and into the surrounding
    puncture. Therefore, it took a long time and a lot of
    rigorous controls to ensure no harm to the placebo
    patients. This is one of the many areas of rigor behind the
    Fallon study, which is scientifically unimpeachable.

    SkepDoc:
    > When Dr. Lipson said there was no evidence, he meant there
    > was no credible evidence. On this blog we are trying to
    > show that just finding something you can classify as
    > “evidence” does not constitute good science. Even quacks
    > claim to have “evidence,” usually in the form of
    > testimonials.

    This is a nonsensical argument — the last gasp of the
    dying lyme denialist. It makes no sense to use an older,
    and totally different study to cast aspersions on a brand
    new study that doesn’t agree with your ridiculous premise.
    The Fallon study was specifically done in response to
    Klempner et al, since the’ve been the leading voices of
    Lyme Denialism. First you lyme denialists claim chronic
    lyme doesn’t exist. Then, when a study is finally approved,
    after years of blockage by the very forces that don’t want
    lyme recognized or treated; now the results of that study
    are in, and a paper is published on a rigorously
    controlled, double-blind, academic study whose conclusions
    derive from an extremely conservative approach,
    specifically because Fallon wanted the rigorousness of his
    study to be unimpeachable by the lyme-denialists. The
    evidence in Klempner’s study is well beyond testimonials.

    You could attempt to stick to science and find something in
    Fallon’s study that you disagree with, but you can’t. For
    one, you clearly don’t know the first thing about Lyme
    disease, so you really have no position to argue from. It
    is up to specialists — not ignorant “skeptics” — to
    determine the quality of the science in the Fallon
    study. Until you have a NEW study that directly disproves
    the Fallon study — using LONG TERM IV ANTIBIOTICS AND
    RIGOROUS TESTING FOR INCLUSION IN THE STUDY — please quit
    attempting subterfuge.

    Stricker answers to the significant experimental problems
    that makes Klempner’s studies worthless in “Counterpoint:
    Long-Term Antibiotic Therapy Improves Persistent Symptoms
    Associated with Lyme Disease.” (Clinical Infectious
    Diseases 2007; 45:149–57
    http://www.ilads.org/files/press_release_7_15_07.pdf )

    > [...] 2 randomized, placebo- controlled trials examined
    > re-treatment of patients with persistent symptoms of Lyme
    > disease (table 2) [101, 102]. Krupp et al. [102] studied 1
    > month of intravenous ceftriaxone, whereas Klempner et
    > al. [101] studied 1 month of intravenous ceftriaxone
    > followed by 2 months of oral doxycycline. The Krupp study
    > showed improvement in fatigue with its 30-day treatment
    > regimen, whereas the Klempner study showed no improvement
    > in quality of life following re-treatment for 90 days. The
    > main problem with these studies is that they included
    > patients who had been symptomatic for an average of 4–5
    > years, and treatment with 1 month of intravenous
    > antibiotics, with or without low-dose doxycycline, is
    > insufficient for patients who have been sick this long
    > [103, 104]. Thus, the generalizability of results in these
    > highly selected patients with persistent Lyme disease is
    > questionable [104].

    The Stricker publication, which predates the Fallon study
    we’re discussing, summarizes what’s special about these
    latest chronic lyme studies:

    > In contrast to these studies, 2 placebo-controlled trials
    > were presented in 2005 at the Columbia/Lyme Disease
    > Association’s annual meeting (table 2) [105, 106]. One
    > study involved oral amoxicillin for 3 months versus placebo
    > for previously treated patients, and re-treatment was
    > successful for the two-thirds of patients with the best
    > initial quality of life. A second study administered
    > intravenous ceftriaxone for 10 weeks to patients with
    > persistent neurologic symptoms of Lyme disease, and these
    > patients had significant cognitive improvement with this
    > treatment. We look forward to publication of these 2
    > placebo-controlled trials, which show that longer courses
    > of antibiotic therapy are useful in patients with
    > persistent Lyme disease.

    Despite poor generalizability, the Klempner study study
    shaped the fraudulent IDSA Lyme guidelines (IDSA excluded
    studies that disagreed w/ Klempner) –
    http://www.ilads.org/publications_cameron_11_2006.pdf

    > In “Generalizability in two clinical trials of Lyme
    > disease” in the current issue of Epidemiologic Perspectives
    > & Innnovations. Cameron’s “Analytic Perspective” takes aim
    > at a commonly-cited study on long-course treatment of
    > patients with Lyme disease. Simply known as “Klempner, et
    > al. trials,” published in the New England Journal of
    > Medicine in 2001, this small study has been generalized in
    > medical literature and certainly by insurance companies to
    > be the be-all proof that 12 weeks of antibiotics for sick
    > patients does not help. Cameron pulls apart the science of
    > the study, and makes it clear that the study is not useful
    > when dealing with a broader population.

    SkepDoc and PalMD, rather than being able to sustain any
    manner of rational conversaion, you quickly turn to
    impuning the motives of the researchers like Dr. Fallon who
    dare contradict the mantra of Klempner-based
    Lyme-denialism. (SkepDoc:)

    > [the study] comes from a group that is highly motivated to
    > validate chronic Lyme as a disease

    That’s like claiming that a study sponsored by the American
    Cancer Society can’t be trusted because they have a
    conflict of interest in that they’re interested in helping
    people suffering from cancer. Apparently, only the
    “science” of Dr. Mengele performing live-human experiments
    on Nazi concentration camp victims are good enough for
    SkepDoc and PalMD … otherwise how else could you assure
    that the doctor conducting the experiment isn’t colluding
    with his patients to get unnecessary medical services –
    you know, defrauding those poor helpless insurance
    companies of money by ridiculously demanding that
    antibiotics be given till an infection gets resolved, or
    depriving big-pharma of profits from unnecessary life-time
    addiction to patented palliatives while a chronic infection
    goes ignored.

    Most studies are done by people motivated to treat a
    disease, or prove a treatment. Why is it that you denialist
    docs are happy to salute a big-pharma-lead study where the
    possibility of skewing scientific results towards profit is
    ever-present — and clearly documented in the “science” of
    experiments that lead to the approval of deadly medicines
    like Vioxx or Bexxtra. And yet if studies are funded by
    concerned patient advocacy groups, it’s a problem?

    The Fallon study and the Columbia Lyme Center are
    “Supported in part by $3 million in gifts from the
    patient-advocacy groups Time for Lyme and the Lyme Disease
    Association” (
    http://www.columbia.edu/cu/alumni/Magazine/Summer2007/RashJudgment.html
    ). I wonder who supports this blog to take the position of
    big-pharma and big-insurance via the practice of boneheaded
    “skepticism”? (Quackwatch??)

  19. Peter Lipson says:

    Uh, blogs are pretty cheap. Free in fact.

  20. Harriet Hall says:

    Niels said, “Apparently, only the
    “science” of Dr. Mengele performing live-human experiments
    on Nazi concentration camp victims are good enough for
    SkepDoc and PalMD …”

    The emotional language, the insults, and the conspiracy theories are bad enough, but Nazis and Mengele!!!???
    Such an accusation is beyond the pale.
    Niels has forfeited his right to a response. Bye, bye, Niels

  21. HCN says:

    Niels said “Apparently, only the
    “science” of Dr. Mengele performing live-human experiments
    on Nazi concentration camp victims are good enough for
    SkepDoc and PalMD …”

    By using Godwin’s Law, you lose. See:
    http://www.videojug.com/film/how-to-behave-on-an-internet-forum

  22. Peter Lipson says:

    Yes, unfortunately, I brought some of my own trolls. I had to ban him for Godwin violations at my other place.

  23. HCN says:

    Oh, wow… it is like he does not learn. I would have used the rather dry Wiki definition but I find that video so much more entertaining, and to the point.

    I wish there was an appropriate video for Scopie’s Law, it might have an amusing cartoon of a demonic ley line burning Scudamore’s bum (see http://leftbrainrightbrain.co.uk/?p=998 for an illustrative explanation).

  24. Niels says:

    Godwin is the white-flag waved by fascists when one has finally pointed out that people are acting like fascists online.

    Likewise, it is fascistic to assume I am supposed to “follow godwin’s law”… but it is a good way for people like ‘SkepDoc’ to side-step the fact that her argumentation is weak. Using an older small-scale study to “disprove” a much larger-scale, more extensive and more modern follow-up to that study? Pathetic!
    Why do you think the AAN rushed out their guidelines as a mere copycat of the IDSA’s? Because if they waited another month, they’d have been clearly committing fraud by ignoring the Fallon study. They knew the study was “in press” and rushed out their findings in the hopes they could screw-over another patient by denying them treatment after their recommendations got codified into insurance/HMO policy… after all they have their entire “autism” and “alzheimer’s” coverups to maintain… right now the ball is in the “lyme denialist” court to come up with a study of equivalent scale that disproves Fallon’s. Until then, it’s game over for the lyme-denialists! science has spoken and you are wrong. dead wrong!

    Re: “Banned for Godwin violations” … puhleez. The only “banning” you’ve done is disenvoweling… in fact, in another blog, you wrote of me lovingly :-) :-)

    > May 21, 2008 PalMD
    > A rather opinionated reader made me aware of a disturbing
    > issue. In Connecticut–the state whose city of Lyme gave the
    > name to the tick-borne disease–the Attorney General decided
    > that the nation’s foremost infectious disease experts have
    > their heads up their arses. Apparently responding to pressure
    > from questionable advocacy groups, the AG launched an
    >”investigation” into the Infectious Disease Society of America’s
    > Lyme disease treatment guidelines. The excuse for the
    > investigation was alleged anti-trust violations.

    Yep, that opinionated reader is probably me:
    http://scienceblogs.com/denialism/2008/05/its_zebra_season_at_the_nih.php#comment-895799 (May 20, 2008 12:11 PM) and rather let my statements stand, the subject of which caused you to post a blog-entry the next day, you found it necessary to censor my un-spun version of the truth.

    And yes, it’s all about fascism in medicine:
    http://scienceblogs.com/denialism/2008/10/worst_paper_ever.php#comment-1151098

  25. msclark says:

    I’ve seen Morgellon’s get somewhat of a “could be true” treatment from New Scientist and from National Public Radio (if I recall correctly). It really bugged me (pun intended). What really bugged me is that the evidence they seemed to accept for Morgellon’s being a real parasitic disease was that some guy in some lab said that he had taken the fibers and tried to burn them but couldn’t, not even at some ridiculously high temperature.

    Now, come on. Really. Not only can no one find the live parasite, just the fibers, not only is delusional parasitosis a known disorder, that has a symptom called the “matchbox sign” that fits the Morgellon’s people very well, not only do dermatologists report that almost anyone with an open sore of any kind will have fibers stuck in the sore… but these parasites make a kind of protein that can’t be burnt?

    Really?

    Here’s part of the NS article:

    “The Morgellons mystery was sparked back in 2001 when Mary Leitao of Pittsburgh, Pennsylvania, suspected that her 2-year-old son Drew had scabies. After treating him with a cream she found tiny bundles of fibres emerging from his skin. She contacted doctors but felt that none took her seriously. “Several physicians concluded that the fibres were coming from either my son’s clothes, or my clothes,” she says. After searching for information, she found a monograph by the 17th-century author Thomas Browne describing “the Morgellons”, a long-forgotten illness characterised by black hairs protruding from the skin. She appropriated the name and set up a non-profit organisation, the Morgellons Research Foundation (MRF), in the hope of attracting advice or help from scientists. To her surprise, she began receiving thousands of emails from people claiming to have the same thing. To date, more than 10,000 families have registered on the site.

    Yet on presenting typical Morgellons symptoms to doctors and dermatologists, people consistently find themselves being told that it is all in their heads. Rather than suffering from a mysterious infection or parasite, doctors say they have a well-documented psychological disorder called delusional parasitosis (DP).

    DP is characterised by an unshakeable belief that sensations of itching and crawling on or under the skin are caused by parasites such as lice, fleas or worms – even in the face of incontrovertible evidence to the contrary. The condition usually occurs in people with other psychiatric conditions such as bipolar disorder, paranoia or schizophrenia, and in cocaine and amphetamine abusers.

    Matchbox sign

    “I was told that the sensations were being caused by my nervous system,” says Ormerod. “Dermatologists took a small biopsy of my skin but said they didn’t find anything. They just told me to stop scratching myself and the itching would go away. It didn’t.” Jones’s appointments with doctors similarly came to nothing. “They sent fibre samples to a lab for testing. All they would tell me was that nothing abnormal had been found.”

    What doesn’t help is that Morgellons patients often develop psychological symptoms such as depression and paranoia – hallmarks of DP. They also have a tendency to bring in small containers of fibres to their doctor as evidence of a parasitic infestation. This, too, is a classic symptom of DP, known as the “matchbox sign”. “When you look at them, the [DP patients'] samples inevitably turn out to be skin, lint, scabs, or household debris or fibres,” says Lynn Kimsey, director of the Center for Biosystematics at the University of California, Davis.

    Most experts have little doubt that Morgellons is actually DP. “Claiming Morgellons disease is a case of people making a connection where there isn’t one,” says Kimsey. “They are advocating some unknown disease, but these are the same kind of symptoms that we see with DP sufferers.”

    And the lesions? Likely to be self-inflicted, says Jennifer Biglow, a dermatologist at Skin Specialists, a private clinic in Minneapolis, Minnesota. Many DP patients, says Biglow, are neurotic excoriators, creating the lesions themselves because of a constant need to pick and scratch at their skin. “When they pick, they get temporary emotional relief,” Biglow says. The broken skin attracts household fibres, and exposes bundles of collagen and elastin from under the skin. To someone with DP, any of these can easily take the appearance of a parasite.

    “To my knowledge there is no evidence presented so far that convinces me that Morgellons patients are infected with any organism known to western science or related to anything or any parasite we currently know,” says Noah Craft, a dermatologist at the University of California, Los Angeles.
    Spurious cases

    Some experts are even concerned that the Morgellons Research Foundation and its made-up disease are having a negative effect on public health. “Individuals with DP are very sick psychologically and badly need help,” Biglow says. “When they read about Morgellons disease they get emotional comfort and temporarily feel better about themselves.” The result, says Biglow, is that many DP cases are missing out on the treatment that could really help them: antipsychotic drugs.

    Within days, however, samples were pouring in. What surprised Wymore was that, under the microscope, fibres from different people looked remarkably similar to each other and yet seemed to match no common environmental fibres.

    Wymore asked his colleague Rhonda Casey, a paediatrician, to examine some patients. Using a dermatoscope – a microscope used for examining skin – Casey clearly saw fibres. These were not just embedded in lesions but were also visible under the surface of unbroken skin and could be removed with tweezers. She observed nothing like them in a control group comprising both healthy patients and those with other dermatological conditions. Wymore and Casey are now working on a case study to submit to a peer-reviewed publication.

    They also took samples to the Tulsa police forensic science team. On first inspection, the forensics experts agreed that the fibres were not from clothing, carpets, towels or bedding. Using spectroscopy they were unable to match the fibres to any of the 880 compounds commonly used in manufacturing commercial fibres. Dye-extracting solvents released no colouration.

    Finally, they tried gas chromatography, gradually heating the fibres to around 370 °C and recording which compounds vaporised off. Save for giving off a small amount of carbon dioxide, however, the fibres remained intact. “Any organic material should normally be vaporised and the inorganic components reduced to ash by the time you get to the top temperature,” Wymore says. “But all that happened was that the fibres darkened. We were shocked, and the forensics team were completely blown away.” The team say they will submit their findings to a journal once they have an idea of what the fibres are, rather than what they are not.”

    Oh, and y’all should know that Lyme disease causes autism (rolls eyes) and there are labs that can and will find Lyme in anyone who sends them a sample (I guess it’s a blood sample), so they find it in autistic kids.

    I think autism is a disability that becomes more or less disabling according to how much certain behavior is demanded. For instance, not making eye contact is not a big deal in Japan, it’s a huge deal here. A child or adult could be subjected to huge amounts of stress and become more disabled by that stress, just because those around him demand eye contact.

    Some autistics may be as functional as a typical person so long as (for example) there isn’t too much of the wrong kind of noise going on in the background, so you can make an autistic person more or less autistic according to where you put them and how they are treated.

    When I was a kid stores and restaurants weren’t silent, but they were much quieter than they are now (at lease in the places I have lived, I don’t think the average kid was subjected to a Walmart like experience when shopping for clothes and pencils 60 years ago… Walmart is painful for lots of autistic kids… then there were few kids who were thrust from home into daycare 60 years ago…. but I digress).

    Autism has aspects that are not intrinsically disabling, and can be life enhancing and even advantageous. That doesn’t mean that there aren’t serious problems that arise from autism, but then again there are some serious problems that are rare in autism and much more common in non-autism by comparison … like chronic lying, womanizing and BritneySpears-ism for three.

    I think autism is a disability, but it’s wrong to call it a disease. Much of what people point to as the disabling part of autism is not autism at all but the mental retardation that is found in some autistic people. Some parents who cry about their poor baby who is autistic and how awful, awful it is then say that if their toddler or 6 year old could write a blog like ‘that autistic person there’ then they’d consider their kid cured of autism. But the autistic person is older (no kidding) than their toddler (no young children are blogging) and the autistic blogger who is sometimes being accused of “not getting it” is still autistic, so what the parent wants to cure is the mental retardation, not the autism.

  26. David Gorski says:

    Yes, unfortunately, I brought some of my own trolls. I had to ban him for Godwin violations at my other place.

    Don’t worry. We’ll keep him on a short leash. Now that pec’s back, I don’t know if we can handle two trolls of that nature.

    Regarding the whole “medical fascism” thing, Niel should chew on this post.:-)

  27. James Fox says:

    Some of the most difficult and challenging clients I’ve dealt with were suffering from delusions involving diseases and medical issues. Sadly treatment for these types of delusions can be difficult and the issue for me was assessing the safety and risks to the children in the home. When a parent holds to a delusional belief that their child has a “fake” disease then the local child protection authorities needs to be called as there can be significant amounts of unnecessary testing and even treatment for what does not exist.

    And before someone gets all wound up about specious accusations of Munchausen’s Syndrome by proxy (Factitious Disorder by Proxy), the concerns involving a parent with a delusion that involves the health of a child is another matter all together as opposed to a parent making their child sick (inflicting symptoms) or seeking care and treatment to meet their own needs.

  28. Niels says:

    Regarding James Fox’s fascist request to turn-in to the gestappo any parents who don’t go-along with pill-pushing doctors and the big-pharma backers of “cookbook” quack psychiatry based-medicine — http://en.wikipedia.org/wiki/New_Freedom_Commission_on_Mental_Health#TMAP_origin_criticism
    This is fascism because the jury is out on Autism, and there’s compelling evidence that it is infectious-based: http://www.lymeinducedautism.com/images/TBILB_Autism.pdf
    http://www.immed.org/NeuroDiseases/JNRnicolson_2007.pdf
    and yet, you want to get children taken away if parents pursue
    this entirely valid approach within a controversial subject.

    In fact, this is happening in Texas right now, home to TMAP, where family-services has become the enforcement arm of big-pharma’s marketing department… don’t believe me, go to http://www.lymeinducedautism.com/ and note:

    ………..
    One of our fellow mothers is in trouble. Because she is seeking biomedical intervention for her son, Marc, who has autism AND lyme disease, a doctor reported her to child protective services. They are now threatening to take her boy away. In Texas, if a child is taken by CPS, none of the family is allowed to see the child, not grandma, grandpa, aunts, uncles, etc. So for all intensive purposes this family would have NO contact with Marc. She is being accused of Munchausen’s Syndrome.

    I know this mother and know that she is just trying to seek the appropriate care for her child. None of the treatments that Marc has done have been any different than what the typical doctor treating autism would prescribe. In fact, under the right treatment, Marc does better.

    … Read their story and help at: http://www.letssavemarc.org

    ………..

    unfortunately, MBP allegations are often waged against parents attempting to get their children better. Often, the allegations start once they start fighting their insurance company or HMO for proper testing and diagnosis, which is always denied. As with other diseases, parents are railroaded into addictive, dangerous, diabetes-inducing psychotropic medication (off-label, always) and never told that there are other alternative treatments that should be pursued first. However, that is not allowed by the authorities enforcing this pharmaceutical-fascism, if it’s regarding lyme-treatment for children, then it’s “Munchausen’s By Proxy” and if it’s an adult then it’s “Somatization Disorder” …

    ……..

    Munchausen’s syndrome by proxy and Lyme disease:
    medical misogyny or diagnostic mystery?

    Virginia T. Sherr, M.D.

    ABSTRACT

    Medical Hypotheses. 2005;65(5):440–447

    May 27, 2005

    Preface to the article

    By Eric G. Mart, Ph.D., ABPP (Forensic)

    Munchausen’s syndrome by proxy (also known as Factitious disorder by proxy) is a diagnosis that lacks scientific validity. Unfortunately, it still occurs for any number of reasons, among which are its uses of psychological profile data with untested reliability and validity, confirmatory bias, and over-inclusiveness of the diagnosis, just to name a few. However, the starting point for making the putative diagnosis rests on a physician’s decision that a possible MSBP victim does not suffer from the disease in question. All discussion about motives, underlying psychopathology and other issues follows from this judgment.

    The paper, Munchausen’s Syndrome by Proxy and Lyme Disease: Medical Misogyny or Diagnostic Mystery? makes it clear that there are significant differences of opinion among physicians with regard to the signs, symptoms and medical course of diseases, most notably Lyme disease. Such disagreement assures an inevitability that parents, especially mothers, whose children suffer from this or similar conditions will be placed at risk for allegations of child abuse, particularly in the present atmosphere in which MSBP is the “disease du jour.”

    In promulgating a hypothesis that the MSBP label may be mostly about misplacement of responsibility for lack of medically significant diagnoses onto innocent mothers, this article performs an important service for children and their parents who suffer from these conditions

    — Eric G. Mart, Ph.D., ABPP (Forensic)

    Chronic, tertiary Lyme disease, a vector-borne infection most accurately designated neuroborreliosis, is often misdiagnosed. Infectors of the human brain, Lyme borrelial spirochetes are neurotropic, similar to the spirochetes of syphilis. Symptoms of either disease may be stable and persistent, transient and inconsistent or severe yet fleeting. Characteristics may be incompatible with established knowledge of neurological dermatomes, appearing to conventional medical eyes as anatomically impossible, thus creating confusion for doctors, parents and child patients.

    Physicians unfamiliar with Lyme patients’ shifting, seemingly vague, emotional, and/or bizarre-sounding complaints, frequently know little about late-stage spirochetal disease. Consequently, they may accuse mothers of fabricating their children’s symptoms-the so-called Munchausen’s by proxy (MBP) diagnoses.”

    Women, following ancient losses of feminine authority in provinces of religion, ethics, and healing-disciplines comprising known fields of early medicine, have been scapegoated throughout history. In the Middle Ages, women considered potentially weak-minded devil’s apprentices became victims of witch-hunts throughout Europe and America. Millions of women were burned alive at the stake.

    Modern Medicine’s tendency to trivialize women’s “offbeat” concerns and the fact that today’s hurried physicians of both genders tend to seek easy panaceas, frequently result in the misogyny of mother-devaluation, especially by doctors who are spirochetally naïve. These factors, when involving cases of cryptic neuroborreliosis, may lead to accusations of MBP.

    Thousands of children, sick from complex diseases, have been forcibly removed from mothers who insist, contrary to customary evaluations, that their children are ill. The charges against these mothers relate to the idea they believe their children sick to satisfy warped internal agendas of their own. “MBP mothers” are then vilified, frequently jailed and publicly shamed for the “sins” of advocating for their children. In actuality, many such cases involve an unrecognized Lyme borreliosis causation that mothers may insist is valid despite negative tests.

    Doctors who have utilized MBP tactics against mothers are likely to be unaware that in advanced borreliosis, seronegativity is often the rule, a principle disagreed upon by its two extant, published, peer-reviewed, Standards of Care. These are guidelines for Lyme disease management–the older system questioning the existence of persistent Lyme and the newer system relying on established clinical criteria.

    Mothers must be free to obtain the family’s preferred medical care by choosing between physicians practicing within either system without fear of reprisal. Doctors and mothers together may then explore medical options with renewed mutual respect toward the best interest of children’s health.

    DOI information: 10.1016/j.mehy.2005.04.009

  29. James Fox says:

    Niles
    When a child is removed because of evidence that a parent is responsible for the child’s illness then what one would expect is that the child would recover and stop having the reported symptoms after being removed from the care of the parent. This typically happens in these situations and when it does not a reasonable course would be to take a second look at the initial concerns and reevaluate the circumstances. So if a child demonstrates no evidence of disease after being removed from the care of a parent what would the explanation be then? When the parent child bond is complicated by either chronic disease and/or parental mental health problems the decisions regarding child safety and appropriate medical care become increasingly complex and difficult. However I doubt that many would object if the state removed a child from a parent who was having their ten year old participate in their BASE jumping hobby, illegal street racing or something equally dangerous and irresponsible. All state child protective systems allow for parents to present second medical opinions in the court process and all parents who’ve had their children removed by the state have a right to timely court hearings and legal representation. While not a perfect system it’s how we do things in this country and its based on the notion that while a parent has a right to raise a child as they choose, when a parent places their child at significant risk of substantial harm the state can intervene to protect the safety of a vulnerable child.

    Parental assertion that a child has a chronic or serious disease and is in need of “treatment” is not an adequate standard for allowing a child to be put at risk from unnecessary and dangerous procedures absent a credible medical diagnosis. Nor should the state consider spiritual intervention adequate for serious diseases requiring medical care for a child not competent to make that decision for themselves.

    We as a society can respect and honor the decisions adults make for them selves. We as a society have enacted laws that do not allow parents the same latitude with regard to the care of their children. This seems reasonable and just to me. But your claim that this process is somehow fascist ignores the reality that child protection laws are the end result of legal democratic legislative process and reflects the will of the vast and overwhelming majority of the populace.

  30. Fifi says:

    Personally, I find the idea that children are objects that are owned by their parents (and are objects to be used – whether it be for ideological, psychological, sexual or financial purposes – by their parents) to be much more fascistic in both tone and ideology. The protection of children’s basic human rights seems much more democratic and supportive of individual freedom to me, particularly when the parent isn’t protecting the child or is actively harming them.

  31. The Blind Watchmaker says:

    Thank you, James Fox, for being the voice of reason here.

    As a doctor, I am quite tired of hearing the phrase..”in the pocket of Big Pharma”. I have practiced for over a decade and I have never once seen any checks from a drug company. I don’t think my partners have either. I wouldn’t mind getting some extra money these days as reimbursements are going down.

    Treating patients should start with compassion, and then incorporate the scientific method to solve problems. The first part involves human contact and emotions. The second part involves rational thinking. We must do the best we can to solve problems in a rational way. It is easy to lose the objectivity of the second part when the emotions of the first part become overwhelming. When objective answers are not obvious, patients (and sometimes their doctors) seek out the path Woo-woo. When patients insist that they have something that is frankly implausible, or non-falsifiable, they become angry when their doctor does not jump on their bandwagon. They then jump on blogs such as this and cry “medical fascism”!

    The wicked, fascist stawmen doctors that have been depicted in the paragraphs above are just nonsense.

  32. Niels says:

    THIS IS MEDICAL FASCISM IN ACTION:

    Noted in alert from http://www.lymeinducedautism.org ::
    http://www.letssavemarc.org/

    ————– ————– ————–
    Marc is a young autistic boy with additional complications for he also faces the devastation of having contracted Lyme disease. He lives with his single mom in San Antonio, Texas. Marc’s mother has been his fulltime and dedicated caregiver and as a result has very limited financial resources. In her search for medical care for Marc, she was referred time and again to physician specialists. The final referral resulted in a proposed battery of invasive tests which she declined, because she feared for the well being of her special needs child and she was aware of the low diagnostic potential for Marc who had already been positively diagnosed with Lyme disease.

    She believed then and still believes now that what Marc needs is an informed local practitioner familiar with treatment. Very soon after Marc’s mother declined the battery of tests, Child Protective Services (CPS), well backed by law enforcement, arrived at her home with a laundry list of charges including “doctor seeking” and Munchausen’s Syndrome by Proxy. CPS is required by law to investigate any complaint or suspicion of child abuse, but like so many situations across the nation a physician or individual who is not thoroughly familiar with Lyme disease can, through CPS, cause a tragic health situation to become an explosive incident. The potential is now criminal charges for this mom and loss of her child by removal to a care situation far inferior to that which she has conscientiously provided.
    ————– ————– ————–

    So basically, they’re trying to take a single mother’s kid away because she was on public health, and in Texas public health, many patients are quickly flowcharted into “all in the head” diagnoses for valid, complex medical conditions such as “Autism.” Simply because a patient behaves abnormally doesn’t mean their illness is “all in the head”… and that goes for Autism, Lyme, Morgellons, CFS, fibromyalgia, etc. In texas public healthcare, such patients are quickly railroaded into the handwaving psychological world of TMAP (see my prev posts); these patients are put on psychoactives without proper testing for “rule outs.”

    For example, autistic kids are often put on risperdone, even though no valid double-blind studies have shown it to be effective — a few “off label” papers sponsored by the manufacturer served as enough “science” to make this (or valproic acid) the defacto treatment for autism, especially in “public medicine.” Despite a total lack of scientific basis, this one treatment modality is forced on patients, without even explaining that there might be an infectious basis and that other treatment is available. This occurs alongside complex health issues that should merit deeper investigation but never are (e.g. most autistic children have GI issues, or off food sensitivities caused by chronic Lyme). They are never properly tested for viral, bacterial, or other infections that have been associated with encephalopathies, specifically Lyme borelliosis, HHV 6/7/8, chlamydia pneumoniae, mycoplasma fermentans and other variants.

    Children’s heath can be endagered by doctors that refuse to consider a child’s diagnosis of “Lyme Disease” made by a specialist — sometimes strange interactions occur w/ Lyme, which is why some doctors suggest that depressed Lyme use an alternative to SSRI’s, even though SSRI’s are often combined with the antipsychotics in the handwaving world of autism treatment. Such warnings would be ignored by the kind of doctors that Marc’s parent refused treatment from… and yet, those are the doctors that turned her in to CPS…

    If a parent decides that the black-box warnings accompanying medications like risperdone are not worth the effect of the drug (which is basically, the child is somnolescent or asleep all day, while having a voracious carbohydrate appetite that results in weight gain and eventually diabetes… that and the “suicide risk”). Alternately a parent with a positive Lyme test and diagnosis from a lyme specialist might prefer to actually have the potential cause of the autism treated first, with much safer long-term antibiotics. There are no “black box” warnings accompanying the lyme treatment usually given to juveniles w/ autism… An informed parent would actually be DOING THE RIGHT THING by trying the much safer Lyme treatment first, with psychotropics chosen as last-resort. And yet in texas, the medical fascists, goose-stepping along to orders from big-pharma to ramp-up off-label use of old psychotropics, achieve their end by calling Child Protective Services on the parent that has an informed opinion about their child’s medical care.

    The jury is out on the proper treatment for autism, but there’s plenty of published, quality medical literature indicating that Lyme disease plays a major role — information purposefully ignored by the psychotropic pushing medical mainstream, or the quackwatch-operatives spewing their denialism on this blog. Part of this “ignoring” has been purposeful and is the subject of the settlement forced on the IDSA by the Connecticut Attorney General regarding their lyme diagnosis and treatment guidelines.

    To take someone’s kid away who is already diagnosed by a specialist as having Lyme disease because the doctors one faces in public healthcare are too clueless to recognize or treat the encephalopathy underlying the childs illdness… that’s fascism…

    Maybe you QuackWatchers prefer to inhabit a “nanny state” where government takes over the love and care that only a parent can provide for their child. How anybody can think that a medical cookbook (IDSA) based on fraud, duped doctors happily going along with the fraud, and an agency enforcing this fraud is in the best interests of the child?

    Finally, it’s an abuse of child protective services to be involving itself in a medical dispute that even the best and brightest minds of medicine can’t come to agreement on: http://www.bmj.com/cgi/eletters/335/7626/910

    AFAIC, if a patient is attempting to follow a doctors orders or diagnosis, and the doctor is licensed in the state, then it is the doctor’s responsibility if harm comes to the child. Should the doctors actions be invalid, then loss of medical license should ensue. Where CPS fits in to a medical disagreement — NOT NEGLECT — is beyond me. That in and of itself is fascism — using law enforcement to suppress disagreement from people that challenge the profitable status quo.

  33. Niels says:

    Maybe you all need to contact CPS regarding the following “medical neglect” as well. Because after all, who knows better, the teachers and parent(s) dealing with the kid every day, or the pig-headed-denialist doctor who sees a kid for 10 minutes, runs a few useless tests, and prescribes a psychotropic?

    Here’s an account of what happens when autistic children are successfully diagnosed and treated for lyme. If the mother of this child in the letter below had the misfortune of using the public health system in Texas, home of TMAP, then a situation would arise like http://www.letssavemarc.org where the psychotropic-pushing lyme-denialist doctor would call CPS when the mother rightly rejected the doctors insistence on a chemical lobotomy.

    —————
    http://stanford.wellsphere.com/lyme-disease-article/teacher-third-grade-student-s-performance-greatly-enhanced-by-antibiotic-treatment/20511

    Teacher: Third Grade Student’s Performance Greatly Enhanced By Antibiotic Treatment

    Posted by Dr. Virginia S., MD

    “I am writing this letter in regards to what I have observed regarding your patient’s academic performance while on his antibiotics compared to his performance without antibiotics. We are now in our third month of school and I have had a solid opportunity to observe the Bruce’s abilities on a daily basis. I have maintained a continual communication with his parents and together we have been able to monitor, both, his social and academic behavior, in relation to his treatment for Lyme disease.

    While taking his antibiotics (which he has done for the majority of the school year), Bruce maintains an enthusiastic attitude towards learning. He contributes to classroom discussions by providing relevant thoughts and reactions to various topics. He is able to focus his attention on independent assignments with a low degree of redirecting by his teachers. His academic performance is definitely at its strongest in the mornings. He is more involved and energized. I have noticed a pattern in the afternoons (2:15-3:30) in that his level productivity seems to falter. I do not see as much participation from him in the afternoons and his success on various assignments is inconsistent, unlike his morning productivity. Factors such as careless mistakes, not following directions, and lack of focus can cause these inconsistencies. However, I am able to monitor his progress in the afternoons, by working with him on assignments or doing progress spot checks. These strategies help my student get back on track and regain his focus. He is very receptive to this type of positive teacher feedback.

    I have noticed a big change in Bruce’s behavior without the antibiotics, unfortunately. During the week of 9/19-9/23, he was taken off his antibiotics. This seemed to affect his ability to function successfully in the classroom. He was continually unable to maintain his focus during classroom activities. His contribution to discussions were off-based and on the verge of silly. He talked to his group mates at times when he was not supposed to. His class work was not at the level of his normal performances. He was not following directions, written or verbal. He took 3 breaks during this week, when he normally does not ask for breaks. Uncharacteristically, he did very poorly on an open-book science assignment on which he should have done very well. I discussed the assignment with him and asked him what happened. He could not answer me. I had him make the necessary corrections and gave him ½ credit so as to not completely affect his science grade. This week of the patient without his antibiotics was like working with another child. His struggles appeared out of his control and I could tell he was getting frustrated.

    Your patient is a wonderful student. Bruce has a very pleasant attitude and wants very much so to please his teachers. I hope that this information is helpful to any decisions made to assist my student in his battles against Lyme disease. Please let me know if there is anything else I can do to help.”

    Sincerely,
    Bruce’s teacher

  34. The Blind Watchmaker says:

    Dr. Neils,

    If the lyme titer for your autistic patient is normal, do you (personally) pretend that it is not?

    Just curious.

  35. Niels says:

    I suggest reading http://www.igenex.com/labtest.htm regarding lab testing for Lyme. It’s a very old paper from Dr. Nick Harris that is still entirely valid today, and describes exactly the issues involved with lyme testing:

    …………………..

    “It is important to note that a positive IgG and/or IgM Western blot only implies exposure to B. burgdorferi. It is only part of the test battery and is not confirmatory for Lyme disease. It does not mean the patient has Lyme disease; that is a clinical diagnosis. It must also be kept in mind that these antibody tests are not static; they change over time. A patient negative in the Western blot may seroconvert to a positive pattern with treatment. Conversely, a patient could redevelop an IgM response, suggestive of a recurrent infection. ”

    …………………..

    http://www.lymeinducedautism.com/images/LIATesting_handout_FINAL.pdf states:

    ……………

    Testing for Lyme disease/Borrelia and other infections is not a simple task. A person with a compromised immune system may not make the necessary anti-bodies needed to get an accurate reading. None of the testing is perfect and someone may have the organism(s) in their body and have a negative test, as well a positive antibody test shows evidence of the body’s response to an organism, not the organism itself. There may be multiple strains of an organism and we only can test for one- such as Bartonella which has nine pathogenic strains but antibody tests only exist for one or two. Therefore, testing is a piece of helpful information that must be looked at in the context of the patient’s history and physical findings.
    The “Lyme Titer” or “ELISA” test that is often first ordered as a “screen” by some clinicians can be very inaccurate. The Lyme/Borrelia “Western Blot” is a more sensitive test. Standard laboratories do not test for all of the “bands” in the Western Blot that are specific to Lyme/Borrelia. Many people will get a false negative from the commercial labs or from a doctor who is not trained to interpret testing properly. It is important to note that if the test comes back stating that it is negative, the results must be deciphered according to the guidelines above. A negative is NOT always a negative.

    …..

    To understand the last sentence, read http://www.wildernetwork.org/Understanding_Western_Blot.html i

  36. The Blind Watchmaker says:

    Ok, for some reason you think someone has lyme.

    The screening test is negative. If the pretest probability is low, then you stop.

    If the pretest probability is high, then you do the more specific test like the Western Blot.

    I guess the question is, if this is negative, when do you move on to find the real issue. The answer should rely on the pretest probability of disease.

  37. Niels says:

    In response to Blind Watchmaker’s assumption of using the CDC/IDSA’s flawed and now-legally-challenged “two-tier” testing… my response is that the CDC/IDSA lyme guidelines are completely bogus. The links I posted are from the ILADS guidelines, which are non-bogus. In addition, ILADS based diagnosis and treatment is the LAW in california ( http://www.maplight.org/map/ca/bill/6896/default/history/action-75793 ) and therefore patients in my state have the right to demand correct treatment. What happens in other states is irrelevant to me, and anything coming out of the CDC is fundamentally flawed and corrupted by corporate profit interests.

    The only doctors that use the flawed-two-tiered approach to testing are non-specialists who don’t know better than to use the CDC’s tests designed for “surveillance” and not “diagnosis.”
    The fact that the CDC doesn’t seem to understand it’s own role and is confusing rules for diagnosis with it’s own need for “surveillance.” For more info on the bogosity of CDC/IDSA Lyme tests for diagnosis, see http://www.ilads.org/cdc_paper.html (ILADS’ Position Paper on the CDC’s Statement Regarding Lyme Diagnosis)

    Getting rid of the “pre test” and going straight to the western blot is especially useful for testing Autistic children for Lyme infection. Typically, in autism, the lyme infection is “chronic” and often vertically-transferred from mother-to-child during gestation and childbirth. In such cases, the ELISA tends to give 100% false negatives, whereas western blot is more sensitive. Seronegative Lyme *IS* possible — often clinically diagnosed lyme patients with negative western blots often post positive Lyme test results after a 4-6 weeks of antibiotics. To not undertand why this is happening, or to remain purposefully ignorant and go “the test is negative… next” is to have no knowledge whatsoever of how the immune system interacts with Lyme, how chronic Lyme suppresses immune response, and how the western-blot detects immune response to infection.

    http://www.lymeproject.com/lymenews/lyme_disease_interview/15.html is a pretty good summary of the issues in Lyme testing, and why the ELISA “pre test” generates significant false-negatives that would prevent taking the western blot test that might show signs of infection in a patient.

    …………

    Dr. Cameron’s answer raised questions about IDSA’s insistence on relying on positive serology in diagnosing and treating Lyme disease. I phoned Nick Harris, PhD, the founder and CEO of IGeneX, Inc., in Palo Alto, California. IGeneX is a specialty reference laboratory for Lyme and other tick-borne diseases. Dr. Harris participated in the CDC meeting at Dearborn, Michigan, in 1995, where the CDC redefined its serologic criteria for Lyme disease. He spoke against the two-tiered testing proposal, the deletion of the 31kDa and 34kDa antigenic proteins (which struck him as incredible), and the limited utility of the IgM Western blot. (8) “All of these actions,” he said, “caused a reduction in the testing sensitivity. (9) They also, by the way, had the potential effect of increasing the potential market size of a new Lyme vaccine under development at the time.”

    Apparently, ventured Dr. Harris, “IDSA feels the benefit of the two-tiered CDC system is the virtual 99% specificity. However, the tremendous downside is the lack of sensitivity when this testing system is used outside of the parameters for which it was designed. This two-tiered system was predicated on three events:

    (1) A known tick bite in a highly endemic area;

    (2) an EM rash;

    (3) testing within two to four months of the tick bite.

    “These are flawed parameters. Even in the best of cases, we can see from the studies of Engstrom et al. (10) that 20% of the EM positive patients with a known tick bite may test negative, and another 20% only tested positive on one of the studies’ six testing events.”

    In addition, Dr Harris pointed out, “by having an insensitive ELISA as the first step many patients are tested either too early (within days of a tick bite) or years after the event; in all these cases, the screening ELISA is negative and the patient is told they are Lyme negative.”

    “A test system cannot have everything,” he said in summing up. “There is a trade off between sensitivity and specificity. That is why the FDA has set 95% specificity as the standard for approved tests. At IGeneX, for example, we’ve developed a Western Blot as a stand-alone-test that has a specificity of better than 95%, using only two antibody defined bands, but it gains 20% or more sensitivity (depending on when in the disease process the test is used).”

    “Where do we go from here?” I asked Dr. Harris at the end of our phone interview.

    “Currently, the Lyme community is in a crisis,” he observed. “We need a simple, inexpensive testing approach to help determine who has been exposed to the Lyme bacteria. Then we need more studies in the clinical research literature that clarify our understanding of chronic Lyme disease. Finally, we need to leave MDs much more discretion than the IDSA guidelines do, so they can make clinical determinations about Lyme disease that result in adequate treatment for both early- and later-stage patients.”
    ……………….

  38. yeahsurewhatever says:

    Dr. Lipson asked: “Is inductive reasoning valid?”

    No. Particularly not in science. But you shouldn’t mince words with pec either way.

  39. Niels says:

    # Peter Lipsonon 13 Oct 2008 at 8:08 pm:
    > http://content.nejm.org/cgi/content/full/357/14/1422

    ILADS Members Question Motives of New England Journal of Medicine Article on Lyme Disease Treatment
    Article in New England Journal of Medicine Fails to Disclose Conflicts of Interest of Overlapping Panel Members

    Bethesda, MD Oct. 3, 2007 — Members of the International Lyme and Associated Diseases Society (ILADS) voiced skepticism regarding the conclusions of a newly published article in The New England Journal of Medicine entitled “A Critical Appraisal of Chronic Lyme Disease”.

    The article, written by a committee of researchers, erroneously concludes that chronic Lyme disease is a “misnomer”, citing lack of scientific evidence proving the existence of the condition. ILADS members pointed out the article does not reflect real-world patient experience with the disease.

    “We have great respect for the New England Journal of Medicine,” states Dr. Raphael Stricker, President of ILADS. “But we are concerned this article will continue to foster inadequate care for patients who are suffering from the long term affects of chronic Lyme disease.”

    ILADS members believe the article’s conclusions ignore more than 19,000 scientific studies on tick-borne diseases and reflect a huge conflict of interest. Specifically:

    ** The article was written by a group of researchers who have consistently voiced a narrow viewpoint on the existence of chronic Lyme disease and appropriate treatment. Eleven of the authors were members of the panel that formulated the 2006 Infectious Diseases Society of America (IDSA) Lyme guidelines. The panel is currently under investigation by the Connecticut Attorney General for exclusionary practices in formulating the IDSA guidelines.

    ** The authors of the article failed to disclose that they are under investigation by the Connecticut Attorney General. This omission violates the “full disclosure” policy of the journal and creates a conflict of interest by calling into question the authors’ motives for writing the article.

    ** Several authors of the current article also participated in formulation of copycat Lyme guidelines for the American Academy of Neurology. Those guidelines were presented as “independent corroboration” of the IDSA Lyme guidelines, when in fact the same individuals were involved with both guidelines and employed the same exclusionary tactics that prompted the Connecticut Attorney General’s investigation.

    ** “It is unfortunate that this article perpetuates the narrow viewpoint on Lyme disease, added Stricker. “We believe it is in everyone’s best interest to broaden the scope of the discussion within the medical community in order to better address the suffering among patients.”

  40. Niels says:

    Why is it that you folks think you have all the answers to be able to deny “chronic lyme” when even the experts on the subject are in rancorous disagreement:
    http://www.bmj.com/cgi/eletters/335/7626/910 (Rapid Responses to: FEATURE: Alison Tonks Lyme wars BMJ 2007; 335: 910-912)
    http://www.darienct.gov/services/health/PDF/2007/11-07-2007%20Lyme%20Disesae%20BMJ.pdf (Alison Tonks Lyme wars BMJ 2007; 335: 910-912)

  41. Fifi says:

    My understanding is that the “alternative” treatments for lyme disease are extremely lucrative.

  42. Fifi says:

    And includes selling people vitamins and supplements, of course.

  43. Niels says:

    # Fifi on 24 Oct 2008 at 11:31 am
    > My understanding is that the “alternative”
    > treatments for lyme disease are extremely lucrative.
    > …
    > And includes selling people vitamins and supplements, of course.

    FYI, supplements play a huge role in improving patient health in chronic infections: http://cpnhelp.org/publicimages/allsupplementschart.html

    My understanding that infectious-disease denialism is very lucrative for the medical mainstream. All those alzheimer’s hospices, autistic programs, cancer treatment centers, MS centers, Parkinsons centers, people on SSRI’s, long-term disability services, wheelchairs, etc. All instead of proper diagnosis and a long-term course of antibiotics no more dangerous than long-established treatment for tuberculosis, leprosy, etc.

    Instead, we get “mechanism of action unknown” drugs that are palliative and not curative, and usually include black box warnings suggesting these should be the treatment of last resort, not first.

    Who is talking about “alternative” … we’re talking about proper medical testing, proper guidelines written for the purpose of patient care and treatment; tests designed for disease diagnosis, rather than “epidemic surveillance.” In short, we want nothing less than what Igenex’s Dr. Nick Harris talked about in the link I posted above ( http://www.lymeproject.com/lymenews/lyme_disease_interview/15.html )
    …..
    “Currently, the Lyme community is in a crisis,” he observed. “We need a simple, inexpensive testing approach to help determine who has been exposed to the Lyme bacteria. Then we need more studies in the clinical research literature that clarify our understanding of chronic Lyme disease. Finally, we need to leave MDs much more discretion than the IDSA guidelines do, so they can make clinical determinations about Lyme disease that result in adequate treatment for both early- and later-stage patients.”
    ……

    Of course, perhaps you’re getting your information from that insurance-industry-hit-piece “Lyme, Inc.” from that medical powerhouse magazine known as “Forbes.” An article that was rushed to press just prior to the Ct Atty General’s forcing the IDSA back to the drawing board regarding its fraudulent lyme guidelines.

    Note that the “lucrative” issue is best leveled against the denialists trying to cut costs and boost preexisting-condition revenue from medical insurance companies:
    > http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284
    > ADDITIONAL FINDINGS OF BLUMENTHAL’S INVESTIGATION
    >
    > IDSA convened panels in 2000 and 2006 to research and publish guidelines for
    > the diagnosis and treatment of Lyme disease. Blumenthal’s office found that
    > the IDSA disregarded a 2000 panel member who argued that chronic and
    > persistent Lyme disease exists. The 2000 panel pressured the panelist to
    > conform to the group consensus and removed him as an author when he refused.
    >
    > IDSA sought to portray a second set of Lyme disease guidelines issued by the
    > American Academy of Neurology (AAN) as independently corroborating its
    > findings. In fact, IDSA knew that the two panels shared key members,
    > including the respective panel chairmen and were working on both sets of
    > guidelines a the same time — a violation of IDSA’s conflicts of interest
    > policy.
    >
    > The resulting IDSA and AAN guidelines not only reached the same conclusions
    > regarding the non-existence of chronic Lyme disease, their reasoning at
    > times used strikingly similar language. Both entities, for example, dubbed
    > symptoms persisting after treatment “Post-Lyme Syndrome” and defined it the
    > same way.
    >
    > When IDSA learned of the improper links between its panel and the AAN’s
    > panel, instead of enforcing its conflict of interest policy, it aggressively
    > sought the AAN’s endorsement to “strengthen” its guidelines’ impact. The AAN
    > panel — particularly members who also served on the IDSA panel — worked
    > equally hard to win AAN’s backing of IDSA’s conclusions.
    >
    > The two entities sought to portray each other’s guidelines as separate and
    > independent when the facts call into question that contention.
    >
    > The IDSA subsequently cited AAN’s supposed independent corroboration of its
    > findings as part of its attempts to defeat federal legislation to create a
    > Lyme disease advisory committee and state legislation supporting antibiotic
    > therapy for chronic Lyme disease.
    >
    > In a step that the British Medical Journal deemed “unusual,” the IDSA
    > included in its Lyme guidelines a statement calling them “voluntary” with
    > “the ultimate determination of their application to be made by the physician
    > in light of each patient’s individual circumstances.” In fact, United
    > Healthcare, Health Net, Blue Cross of California, Kaiser Foundation Health
    > Plan and other insurers have used the guidelines as justification to deny
    > reimbursement for long-term antibiotic treatment

  44. Fifi says:

    There’s one thing that’s very different about profit in CAM and in medicine (and you’ll get no argument from me that drug companies are motived by profit, just like companies that sell vitamins and supplements…such is the nature of business and is why good regulations are necessary – just look at what happened on Wall Street due to deregulation). Medicine has oversight (whether one considers it enough or not, at least it exists), CAM doesn’t. Medicine (and drug companies) can’t legally make false claims and get punished when they caught doing so (this doesn’t mean drug companies don’t lie or lobby to be deregulated – for instance, direct to public advertizing is essentially unethical). Not so CAM, vitamin and supplement manufacturers successfully lobbied to get a bill passed that means that they can make wild claims and sell things that aren’t actually what they purport to be. In many cases, what CAM is selling is things that appear to be one thing but are actually something else (including sometimes even containing hidden pharmaceuticals!)

    I’m all for good nutrition but CAM spreads lies about nutrition, about food and about vitamins and minerals being natural in the first place (food is natural, nutrition in a pill form isn’t). Throw in that some of the people who seem to be big players in promoting these ideas actually front Scientology organizations and teach Scientology’s “sales” techniques and it’s easy to see that Big Vita/Supp/Scientology are integrally involved in crafting the non-science based ideas about nutrition and anti-medicine messsage that have little to do with health and medicine and a lot to do with conning people. A prime example of this would be chiropractor Freddie Ulan who founded a Scientology hate group.

    http://www.unsinc.info/about_freddie.html

    “In 1986, he worked to spearhead the establishment of an international network of volunteer organizations to help clean up field of mental healing.This formidable psychiatric watch-dog group, CCHR, (Citizens Commission on Human Rights), now has over 300 chapters world-wide.”

    http://en.wikipedia.org/wiki/Citizens_Commission_on_Human_Rights
    http://www.scientology.org/news-media/faq/pg037.html
    http://www.xenu-directory.net/topics/cchr-exhibit.html

  45. Fifi says:

    Er – that should read “vitamin and minerals in pill form” since obviously vitamins and minerals are natural.

  46. Tyr says:

    In regards to the discussion about children I thought I would post a brief tidbit from an older study that was done (study link at end):

    In November 1997, the journal Pediatrics published the results of a terrifying experiment. Doctors at several hospitals in Great Britain had decided to covertly videotape 39 parents — most of them mothers — whom medical personnel had begun to suspect were deliberately bringing their young children to the brink of death. What they saw astounded them. In 30 of the 39 cases, the parents were observed intentionally suffocating their children; in two they were seen attempting to poison a child; in a third, the mother under surveillance deliberately broke her 3-month-old daughter’s arm. Many of the parents seemed as methodical and as brazen, as scoured of fear or conscience, as any serial killer. “Abuse was inflicted without provocation and with premeditation, and in some instances, involved elaborate and plausible lies to explain consequences,” the study’s authors wrote. “For example, one mother claimed that she had suffocated her son because of stress related to his crying and continually waking her from sleep. However, under surveillance, the mother was seen, with premeditated planning, to suffocate her infant when he was deeply asleep. The majority of other cases showed attempted suffocation when the child was asleep or lying passively on the bed. Children did not appear to provoke their parents into abusing them.”

    The odd thing — the really chilling thing — was that these were women (and a few men) who masqueraded as good parents, the sort who rushed their children to the emergency room when they had trouble breathing, and stood by them with fortitude and devotion while the doctors puzzled out what was wrong. They were slick, many of them; they could morph from demonic menace to concerned mum the minute a doctor or nurse walked in the room. They liked the social prestige of a mysterious disease; they liked the proximity to powerful medical professionals; they liked the attention and the drama — the wail of the sirens, the adrenalin rush of the ER. And more than that, they seemed to get some acidy trickle of satisfaction out of terrorizing their children.

    2:02 p.m.,” reads the transcript of the case in which the mother snapped her daughter’s arm before nurses, alerted to what was happening on videotape, could stop her. “Mother slaps the infant’s head. 2:03 p.m.: repeated. 2:09 p.m.: repeated. 2:53 p.m.: The mother tears up the nursing record and throws it out the window. 2:58 p.m.: The mother swears at the infant, accusing her of being responsible for them having to remain in the hospital. There is growing anger with the mother repeatedly ordering the infant to kiss her. ‘Give me a kiss, you little sod, give me a kiss. Kiss! Kiss! Kiss! Kiss!’” And so on and on.

    Article that this was taken from is here http://www.salon.com/mwt/feature/1998/01/cov_26feature.html

    The study link itself is here http://pediatrics.aappublications.org/cgi/content/abstract/100/5/735

    I apologize of this seems off base but Niels rants just irked me a tad.

  47. Fifi says:

    Tyr – It’s not at all off base considering the blog topic, it is an excruciating read though. Parents, particularly educated ones, who abuse their children often give the appearance of being “good parents” and like to enlist various authorities to confirm their child is “sick” or “bad” and to get sympathy for themselves as the “suffering parent”. The sad thing is that horrible and sociopathic as these parents are, they too are suffering and their actions are a grotesque symptom of mental illness (that they can’t admit to themselves). In a very twisted way, the parents are seeking attention and caring using their child as a proxy. (Since directly seeking help for themselves would mean having to admit that their superficial self image as the perfect parent – or as the victim of their child – would be shattered and they’d be left with only the reality of who they are that emerges when alone with their child.)

  48. Fifi says:

    It’s also not uncommon for abusers to demand their victim comfort them and reassure them that they’re loved after they’ve abused their child or spouse – this actually speaks to one of the key dynamics of many abusive relationships (and is a common method used in indoctrinating people into cults, which is why people with unresolved abuse issues often end up in cults since they mimic their abusive family so it feels like “coming home”).

  49. Tyr says:

    Preaching to the choir here Fifi. I have worked with quite a few cases over the years (I work in the MH field) both in correctional settings and in public and private settings. What is even more sad is that some of those parents are not “suffering” a bit over what they do to their children and others. Working with certain populations was an eye opening experience for me.

  50. Fifi says:

    Tyr – Just adding my voice to the choir because I think what you brought up is extremely relevant to the original blog topic :-) I didn’t mean to imply that the abusive parents suffer or feel remorse for what they do to their children as a means to get attention for themselves and to demonize their child – people with sociopathic personality disorders feel no remorse or empathy, it’s why they can do what they do and the core of their disorder. What I was trying to say was that as children they themselves usually suffered abuse and contempt for being “weak” (otherwise known as being a child) and were also expected to comfort and soothe their abuser (not because the abuser feels remorse and wants to be forgiven but because the abuser sees themselves as the victim even while they’re abusing their child). People with sociopathic personality disorders don’t see their children or anyone else as individuals, they see them as extensions of themselves and a means to an end. The child’s only value to the parent is as an object to be used. And, yes, it is hard to comprehend for any of us who experience empathy to comprehend how anyone could do this to any child, let alone their own. On the surface, people with these kinds of personality disorders can be incredibly charming, but it’s just a means to manipulate. They also often hold positions of power due to being incredibly ruthless, image conscious and power hungry. It’s easy to see how people like this end up being cult leaders, heads of corporations, politicians and successful con artists.

  51. Tyr says:

    I agree. Roger Coleman is a perfect example of what you are talking about. The man even made it to the cover if Time magazine, had Mother Theresa speaking up for him, appeared on larry king even. They just showed his case again and I use it to show people what a real psychopath is.

    I think quite a few of these type of people make it into the alternative med areas. (Along those lines I consider someone like Kevin Trudeau to be very close if not one also).

  52. Fifi says:

    Tyr – I agree that some make it into alt med areas and one can see why it’s so tempting. That said, it’s also a personality type that’s attracted to real medicine, law and all kinds of non-woo professions (okay, maybe I shouldn’t include law! ;-) ). This personality type exists in most professions that have some potential for power or fame and that fluff up the narcissist’s image of themselves as powerful and superior to others. It’s much harder to get away with an “I am a God” attitude in medicine these days (or so it seems!) than it used to be so alt med and the wonderful world of woo which is all about magic and magical beings is much more conducive to being fawned over and considered a God. Plus it’s a much more lucrative con to be selling people air and water than to actually be practicing medicine, it’s also easier to start a cult around pseudoscience and flip it into a religion when convenient.

  53. Fifi says:

    I’d also like to add that many lovely, kind people who genuinely believe they’re learning an “alternative” science and effective form of healthcare go into alt med. Some of them because they were swindled by sociopaths into expensive “educations” or magical initiations or whatever but many just because they’re kinda flakey people who don’t have very good critical thinking skills or much idea about medicine. But, yes, both the new age end of alt med and the fundamentalist one seem to be home to some serious sociopaths.

    I have no idea what camp Kevin Trudeau falls into.

  54. Kikki says:

    Peter,

    You and the other contributors at SBM should really watch the documentary “Under Our Skin”.

    You would be less ignorant.

    http://www.underourskin.com/watch.html

  55. starling says:

    I have a couple of questions. I realize that since the original post and most of the subsequent exchange took place five months ago, everyone has likely moved on (and no one will see this). Too, this blog may not be the right venue for this question, but it’s the only interactive mote of scientific integrity I can find regarding Lyme and chronic Lyme on the Internet, so here goes:

    Does a more recent reference than MMWR 1995 exist for validated methods and appropriate criteria for interpreting assay results? What is the most current reference for FDA-approved assays to detect Lyme infections, specifically, PCR using blood or other samples? The most recent reference I can find is the 2005 CDC notice indicating that PCR is not a validated assay, but “Lyme specialist” labs continue to offer PCR as part of their diagnostic assays for Borrelia. Is PCR a good diagnostic tool or not?

    Too the 2005 notice recommends Western immunoblot as a secondary test to follow up positive or ambiguous EIA and IFA assays, but I understand from more recent literature that Western blot is a coarse surveillance test that is not useful for individual diagnoses.

    [Niels need need not respond.]
    Thank you!

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