Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
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Walitt and Shorter - again!

Discussion in 'General ME/CFS News' started by cyclamen, Nov 30, 2016.

  1. cyclamen


    Brian Walitt praises E. Shorter in a publication from this November, submitted in September.

    Some Quotes from the Paper

    "What these data mean, practically, is that psychosocial and environmental forces, physician and patient’s beliefs strongly a effect fibromyalgia diagnosis and status. The distinguished medical historian Edward Shorter characterized fibromyalgia as a “psychic epidemic, an illness attributiven on that spreads epidemically, and then is forgotten"

    "It is wise to remember George Ehrlich’s admonition: “When one has tuberculosis, one has tuberculosis, whether or not it is diagnosed. The same is true for cancer, rheumatoid arthritis, hookworm infestation—really, of the gamut of diseases but not for fibromyalgia (FM). No one has FM until it is diagnosed”"
    citing to Erlich's paper entitled "Pain is Real; Fibromyalgia isn't"

    "A Criteria Negative FM diagnosis of fibromyalgia can legitimize vague
    and difficult or distressing symptoms, allowing entrée into official
    diagnosis and government approved treatments, or providing a
    way toward official disability status. All doctors and patients have
    to do is agree on the diagnosis. There is no reliable way to dispute
    such a diagnosis, and such a Criteria Negative FM diagnosis can be “helpful” to the patient and to the physician who struggles to handle a difficult problem and sometimes a difficult patient...

    "For patients, there is a battle to establish and sustain the
    legitimacy of fibromyalgia, as “society does not readily grant
    permission to be ill in the absence of disease...”

    "Somatic symptoms and syndromes have always existed, but what
    drives the modern diagnosis of fibromyalgia?
    Three essential stakeholders:
    1) The pharmaceutical industry (Pharma);
    2) Physicians with intellectual conflicts of interest (COI) and
    ties to Pharma;
    3) Patient support organizations...

    "The role, physicians play in publishing data on fibromyalgia must
    be mentioned. Index Medicus now (September 2016) lists 9,366
    article addressing fibromyalgia, and the tangible and intangible
    benefits physicians receive from publishing are substantial
    [18,33]. Why do independent investigators do fibromyalgia
    studies? Because it is easy to find patients and there are always
    abnormalities. If you look hard enough almost any questions [sic]
    can seem publishable and justified as an incremental increase in
    scientific understanding.

    "Finally, there has been an enormous and often quite successful
    effort by patient support groups to legitimize fibromyalgia
    and support fibromyalgia physicians. These efforts have
    been documented elsewhere [19,34-36]. For patients and
    their advocates, the suffering of fibromyalgia is a self-evident
    demonstration of legitimacy, even if the scientific reasons used
    to establish its medical legitimacy may not be."
    leela, Chezboo, Nielk and 17 others like this.
  2. Wildcat


    Quite a snake in the NIH grass!
    Snow Leopard, Nielk, Hilary and 9 others like this.
  3. Chrisb

    Chrisb Senior Member

    I see that he brings Big Pharma into the debate. Pity he has nothing to say about Big Psycho.
  4. worldbackwards

    worldbackwards A unique snowflake

    You shouldn't call Shorter that. He might get upset. :)
  5. Simon


    Monmouth, UK
    Neurasthenia is often considered to be what is now called mecfs, so I find that statement particularly disturbing coming from someone playing a key role in the NIH's intramural mecfs study.

    It now seems likey that it was Brian Wallit invited Edwards Shorter to give his talk at the NIH.
    leela, moosie, adreno and 20 others like this.
  6. Hip

    Hip Senior Member

    The Brian Walitt commentary says:
    The two studies [1,2] he refers to in this bolded statement are:

    (1) The Prevalence and Characteristics of Fibromyalgia in the 2012 National Health Interview Survey
    (2) Three-Quarters of Persons in the US Population Reporting a Clinical Diagnosis of Fibromyalgia Do Not Satisfy Fibromyalgia Criteria: The 2012 National Health Interview Survey

    I am a bit brain foggy today, but it seems these issues revolve around the fibromyalgia diagnostic criteria used. Perhaps someone with a sharper mind can understand what's going on in those two above studies.

    In the second study, they say: "We used the National Health Interview Survey (NHIS) to determine the prevalence of self-reported clinician diagnosed fibromyalgia ... "

    Generally, it seems that fibromyalgia is diagnosed with the American College of Rheumatology (ACR) classification criteria, developed in 1990. These ACR 1990 criteria required the presence of widespread pain in combination with pain on palpation at 11 or more of a set of 18 specific tender point sites on the body.

    But then in 2010, a new and more sloppy set of fibromyalgia criteria were introduced by Frederick Wolfe at the ACR, which did not use a tender point examination. The reasons for dropping this tender point examination are given as:

    Further points on the new ACR 2010 criteria:

    I don't know much about fibromyalgia diagnosis, but I know there is also the Canadian consensus criteria for fibromyalgia, which is a sister document to the Canadian consensus criteria for myalgic encephalomyelitis. Like the ACR 1990, the fibromyalgia CCC involves a tender point examination, and requires pain to be present during palpation of at least 11 of 18 specified tender points.

    Does anyone know how expert fibromyalgia specialists view these three different diagnostic criteria: the ACR 1990, the fibromyalgia CCC, and the new sloppy and dumbed-down ACR 2010?
    Last edited: Nov 30, 2016
  7. Valentijn

    Valentijn Senior Member

    The weird thing is that Wolfe is Walitt's co-author of the present article, yet seems to be using the existence of his own craptastic criteria as a basis for arguing that Fibromyalgia doesn't really exist as a meaningful diagnosis.

    I wonder if we'll see a similar push from Oxford CFS researchers. If they can't ignore their high rate of misdiagnosis or diagnosis which doesn't meet international standards, will they switch to claiming that CFS is therefore meaningless? It would still make the insurance companies happy, and they could then ignore ME/CFS as a discrete disease and lump it in under a generic diagnosis of "your symptoms must be imaginary because I say so."
    leela, Never Give Up, alkt and 10 others like this.
  8. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

    Toronto, Canada

    It looks like the CCC for FM has been usurped by Mary Ann Fitzcharles who presented about FM and her suspicion of patients:

    Do not overmedicate
    Do not overmedicalize
    Still a grab bag diagnosis
    Diagnosis can be misused by some

    Fortunately not all of her colleagues agree with her suspicion of FM patients, as Manfred concludes:

    In their abstract, Fitzcharles et al (9) refer to “… the prevalent social
    concept of disablement due to FM”. We are unaware of the existence
    of such a “prevalent social concept” except in the minds of those who
    deny the validity of FM

    I cannot attach Fitzcharles' stigmatizing presentation because the files too big, but have attached Manfred's response to one of her papers.

    Attached Files:

    leela, actup, Luther Blissett and 7 others like this.
  9. Large Donner

    Large Donner Senior Member

    I'm not sure that's correct Simon and we should only entertain that word via the following reasoning:

    Neurasthenia is a late 1800s early 1900s term for just about anything that they considered they couldn't objectively give a diagnosis for. Which was just about anything really prior to blood testing, CT machines, MRIs, Xray etc etc.

    At that time they still didn't understand that not washing your hands after performing surgery could make other people ill.

    So this notion from people like Shorter that, "we have seen this all before in the proven label of Neurasthenia", is just about as stupid a "scientific concept" any academic can possibly fall for. It is basically a definition of everything that's wrong in history via lack of available understanding and then reinventing the stupidity whilst still claiming that Neurasthenia was ever anything other than not being able to diagnose Parkinsons, epilepsy, MS, ME, blood disorders, cerebral palsy, stroke etc etc etc.

    Its already proven via history that the term Neurasthenia was nothing other than failure to diagnose it has never been a valied concept as a stand alone principal other than stupidity.
    Riley, moosie, alkt and 12 others like this.
  10. Denise

    Denise Senior Member

    leela, Luther Blissett, Sean and 2 others like this.
  11. Esther12

    Esther12 Senior Member

    Yeah, I agree that some are far to willing to just assume 'neurasthenia' is the same as 'cfs' - but Shorter is very much in that group so I think Simon is right to say that is worrying because of what's "often considered".
  12. Large Donner

    Large Donner Senior Member


    Yes but that could just make us repeaters instead of challengers. Since Shorter has been pushing this Neurasthenia concept recently I have noticed a lack of challenge to the very source of the concept itself and how very flawed it is. I don't only mean from academics I also mean from some of us and I feel its because it causes an emotional response rather than the obvious one, and that is that Neurasthenia has never been a valid medical construct, period.

    The obvious riposte to "Neurasthenia is just ME as a reinvention of old ME which is just Neurasthenia" is:

    Stop talking rubbish Shorter, Neurasthenia has only ever been a failure to diagnose and at source would have encompassed numerous diseases due to historical ignorance.

    Lets not fall into the trap of making Neurasthenia guilty by association with ME or being ME which "may or may not equal to "Neurasthenia".

    By doing that we are falling into his trap, trying to disassociate ME from Neurasthenia and therefore entertaining the concept that Neurasthenia is a safe scientific concept. Its historically proven to be nonsense.
    Last edited: Nov 30, 2016
    Riley, ukxmrv, Sean and 4 others like this.
  13. Esther12

    Esther12 Senior Member

    To me it seems that very little about 'neuasthenia' is proven, which is one reason why I'm not sure much can be claimed about it and CFS.

    People like Shorter are happy to go far beyond the evidence to make bold and exciting claims founded on BS. I don't know how worthwhile it is challenging them beyond just pointing out that 'there's no good evidence for that'.

    I think that some patients can see the proposed neuasthenia link as a way of combating the 'disease of modern society' type myths that float around, so there may be less criticism of it because of that? For both, I feel like I'd just leave it at 'there's no good evidence for that'.
    Valentijn, Sean and worldbackwards like this.
  14. dreampop

    dreampop Senior Member

    I never understood walitts argument that fibromyalgia didn't exist when doctors don't diagnosis it - or that the neurothrsia history adds any sort of substance to that argument. For him to ignore the obvious counter arguments, I have no doubt this line of thought is a process of discrimination. I don't know what to say in these forums anymore but for him to work on CFS at the NIH is deeply disturbing and should worry everyone.
    Riley, ukxmrv, Valentijn and 12 others like this.
  15. halcyon

    halcyon Senior Member

    From some of the descriptions I've read of neurasthenia, it sounds basically identical to CFS, complete with PEM. It seems likely that many people given that label did in fact have CFS and were just told it was all in their head, just as we are today with CFS.
    Sidereal, Chrisb and Sean like this.
  16. Esther12

    Esther12 Senior Member

    Yes, but it also seems like there were a range of descriptions, different doctors using the label in different ways, and not much solid evidence of anything. It certainly seems likely that some who would now be classed as having ME/CFS would have been classed as having neurasthenia in the past, but I don't know how much more than that we can really say. With ME/CFS we don't have much good evidence from the last twenty years, never mind from a hundred+ years ago.
    Sean likes this.
  17. halcyon

    halcyon Senior Member

    Also sounds just like CFS.
    worldbackwards and Esther12 like this.
  18. Esther12

    Esther12 Senior Member

    Yeah, but it means a lot of the comparisons made are less than enlightening. ? x ? = ??
  19. Nielk


    My bigger concern is with Dr. Koroshetz who in his last call to advocates has stated that he has complete confidence in Walitt's ability to be the lead associate investigator on the NIH me/CFS Clinical Study.

    This, in reply to advocates' evidence of Walitt's psychogenic beliefs about ME/CFS.

    I question then Koroshetz' ability to chair the ME/CFS Trans-NIHWorking Group.
    geraldt52, ukxmrv, Solstice and 4 others like this.
  20. alkt

    alkt Senior Member

    would it be possible for the whole history of psychiatry to be properly evaluated .and finally proven to be snake oil salesmen taken advantage of a wholly inadequate medical profession. from various quotes and reports on noted people in this field of psuedo medicine .every thing they purport to be factual is solely based on the misbegotten beliefs of a handful of egotistical bastards.
    TiredSam likes this.

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