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The Beginning of the End for Fibromyalgia Patients

Discussion in 'Fibromyalgia and Connective Tissue Disorders' started by Melanie, Jul 28, 2018.

  1. Melanie

    Melanie Senior Member (Voting Rights)

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    Fibromyalgia: A Short Commentary

    Frederick Wolfe and Brian Walitt

    Walitt is at the NIH working on the NIH Post-infections ME/CFS Study who thinks ME/CFS, Fibromyalgia, and Lyme Disease are psychosomatic.

    This "commentary" was the beginning of the end for Fibromyalgia patients. Fibromyalgia will be psychologicalized and more depression and anxiety drugs shoved down their throats with the Lightning Process and CBT being the treatments.

    Note how the last few paragraphs shuts down patient support groups.

    Our only hope now is the success of the EpicGenetics vaccine trial.
     
    Last edited: Jul 28, 2018
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  2. Hutan

    Hutan Moderator Staff Member

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    This paper was written in 2016. I agree the views are concerning.

    However, I believe now that the NIH study is not being affected by those views (indeed I would have tried to joined the study if I qualified) and perhaps Walitt is revising his views on people with medically unexplained symptoms as a result of it.

    I wouldn't say that this was the beginning of the end for fibromyalgia patients. I think it was probably just more of the same old 'female hysteria' idea. People held views like this long before the paper.

    If anything, I think there is more hope now as patients gain more confidence to reject psychosomatic theories that don't fit with their experience. For evidence of that, we just need to think about that Medscape clinical question of the day before yesterday that had a young woman at an ER department in pain. She was paying close attention to what the doctors said and offering ideas for treatments. The four options for a diagnosis given to choose from were all variations of hysteria (e.g. conversion disorder, Munchausen disorder). When this was commented on in twitter and brought to the attention of Medscape, the question was quickly withdrawn and a meaningful apology was made. This I think is progress.

    Edit - I'm sorry, I have only just started reading this thread about fibromyalgia here. I see it covers some of the same ground as my post.
     
    Last edited: Jul 28, 2018
  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    What is it about this article that people find worrying? It seems to me fairly reasonable. The suggestion is not that people with fibromyalgia have hysteria or biopsychosocial illness but that the label 'fibromyalgia' is pretty useless because its use is so dependent on preconceptions by doctors and patients. I agree with that.

    The point that Pfizer may have made the name popular to sell Lyrica seems plausible. That is exactly the sort of thing that goes on at drug stands at medical meetings and sponsoring of 'symposia'.

    'Fibromyalgia' is obviously a rag-bag diagnosis. It may well be mostly used by doctors to get white women who annoy them out of the door. That does not have anything to do with people with pain we do not understand having pain we do not understand.
     
  4. James Morris-Lent

    James Morris-Lent Senior Member (Voting Rights)

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    I generally agree with Jonathan. Many criticisms in this paper seem apt.

    I've heard Wallitt talk about fibromyalgia and I get that he is one of the true-believers of MUS psychogenesis. But people often are really effective at producing insightful criticisms of ideas and phenomena opposed to their own viewpoints, and this seems to be the case here. I think he is a space cadet and that what he would like to do with MUS would be disastrous. However, he and this other fellow Wolfe have quite lucidly laid out some real weaknesses and blind-spots in the approach of people who presumably would like a useful biomedical understanding of whatever the thing(s) we call fibromyalgia actually is/are. On the merits, that's useful contribution.
     
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  5. Hutan

    Hutan Moderator Staff Member

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    The authors have based a lot of their statements on the 2012 National Health Interview Survey which interviews around 40,000 people for about an hour. This survey covers the gamut of health related issues, so it is likely that questions that allow someone to decide whether a diagnosis of fibromyalgia is warranted or not do not make up a large part of it.

    And yet, the authors make a big deal out of the fact that a large percentage of the people with a fibromyalgia diagnosis in this survey do not, in their view, adequately meet the criteria for a diagnosis. They point out that the vast majority of these people are women and are white.

    I don't know what questions Walitt and Wolfe found diagnostic of fibromyalgia on this survey and I'm not sure I can be bothered to dig through their other publications to find out. They do make reference to the symptoms needing to be severe enough to warrant a diagnosis. It seems to me that a person who has the resources and self-confidence to seek pain control medication, who is able to take on a socially sanctioned role of housewife and who lives in a warm house with good food is a lot less likely to suffer badly than a person who is not prescribed opiates because of the fear that they might be an addict or does not have health insurance and must work as a cleaner in order to provide for her family.
     
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  6. Hutan

    Hutan Moderator Staff Member

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    A positive reference to Edward Shorter is worrying (particularly as we know that someone in the NIH brought Edward Shorter in to present his misogynist ideas to people working on the ME/CFS study).

    let alone the paragraph that follows that suggests that fibromyalgia only became prominent when neurasthenia became recognised as a psychological illness. The inference being that the fibromyalgia term lends bio-medical legitimacy to what is in fact a psychosomatic illness.
     
    Last edited: Jul 28, 2018
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  7. Melanie

    Melanie Senior Member (Voting Rights)

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    I don't think the new ICD-11 for Fibromyalgia coding got to where it is because of WHO or those in charge of the ICD. Someone is pushing the BPS theory. From this article in the NY Times, "Dr. Frederick Wolfe, the director of the National Databank for Rheumatic Diseases and the lead author of the 1990 paper that first defined the diagnostic guidelines for fibromyalgia, says he has become cynical and discouraged about the diagnosis. He now considers the condition a physical response to stress, depression, and economic and social anxiety.

    'Some of us in those days thought that we had actually identified a disease, which this clearly is not,' Dr. Wolfe said. 'To make people ill, to give them an illness, was the wrong thing.'"

    Well, I'm not saying Dr. Wolfe is behind the ICD coding, but I am saying that for the lead author of the 1990 paper that first defined Fibro to have said this in an interview and then write a "commentary" with a friend of BPS, it just holds a lot of sway with those that are involved with ICD. And why, just why didn't any Fibro orgs do anything about ICD-11?

    But maybe people that don't have Fibro don't think it is a big deal. If Jose Montoya or Nancy Klimas started making comments like that about ME/CFS to the media and writing a "commentary" with Trudie Chalder expressing their issues with CFS and then the coding in ICD-11 got even worse than where it was in ICD-10CM then maybe you would have something to say. No?

    Let me add this:
    "So fibromyalgia is a social illness, it’s a societal illness, it’s a personal illness it has social consequences for patients and doctors and financial consequences that are worth a lot of money for pharmaceutical consequences, it is worth a lot publications to physicians. There is a lot invested in what I would call a psycho-cultural illness."
     
    Last edited: Jul 29, 2018
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  8. Sean

    Sean Senior Member (Voting Rights)

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    Especially by those postulating psycho-cultural illness as the explanation du jour for all and any unexplained symptoms.
     
  9. Hutan

    Hutan Moderator Staff Member

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    Exactly.

    Wolfe in the 2013 document @Melanie linked to above:
    It doesn't take a lot of intellect to work out that culture certainly does determine how symptoms are reported and framed.

    What clearly takes rather more insight is to accept that one's own prejudices and eagerness to label others not like oneself as inferior make it easy to dismiss others' suffering as
    1. caused by their own faulty thinking, and
    2. not nearly as significant as the sufferers suggest.
     
    Last edited: Jul 29, 2018
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  10. Three Chord Monty

    Three Chord Monty Senior Member (Voting Rights)

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  11. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I agree that looking at other documents it is clear that Wolfe and Wallet have very confused and unhelpful ideas about people with pain and also people with ME. That looks to be because they are dim - they do not really understand what diagnoses and diseases are about. You would have to be dim to invent the diagnostic criteria for 'fibromyalgia' in the first place to my mind. That said, most of what is said in this commentary looks to me reasonable. The central point is that the whole idea that there is a disease called fibromyalgia does not stack up. That is in stark contrast to ME where it does stack up pretty well.
     
  12. shak8

    shak8 Senior Member (Voting Rights)

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  13. shak8

    shak8 Senior Member (Voting Rights)

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    I've been a fibro patient since 1996 and my impression of Frederick Wolfe has been very negative. He is a jerk, in my opinion, a nit-picker, a disbeliever. I discount whatever he says. He seems very aggressive and misanthropic in his views.
     
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  14. shak8

    shak8 Senior Member (Voting Rights)

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    And I don't think his research is valid.
     

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