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Latest from Prof Hooper and Margaret Williams, DSM V submission

Discussion in 'Action Alerts and Advocacy' started by Daisymay, Mar 24, 2010.

  1. Mithriel

    Mithriel Senior Member

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    This is a wonderful document from a very elderly man who has defended us and fought for us for decades.

    Maaretn is completely correct that the phrase was used to stick in the minds of listeners and to give an overall impression yet still be deniable.

    If Esther wants to be fair and reasonable and give these people the benefit of the doubt while they walk all over us that is her right.

    I for one hope that the APA pay more attention to the content and overwhelming evidence in the document.

    Mithriel
     
  2. Esther12

    Esther12 Senior Member

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    I tried to make this clear in post #11.

    I tried to make it clear that I understood the difficulties of writing a document like this. Certainly, other people are free to use different tactics to those I would prefer. I think that when we stray from being fair and reasonable in our letters to organisations like this that it is unlikely to work in our favour. I could be wrong.
     
  3. Angela Kennedy

    Angela Kennedy *****

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    I have to say Ester, I don't think Hooper and Williams have "strayed from being fair and reasonable" at all. If your only problem is 'the undeserving sick' comment, then you must be aware that while Sharpe claims it's been quoted out of context, others (even here, and certainly the honey fumblings blog) have shown how the comment is contextualised with Sharpe's own view of the disease. His comments were problematic at best.

    Is this your only problem with the Hooper/Williams submission? Because, no, it hasn't been clear.
     
  4. Esther12

    Esther12 Senior Member

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    I was replying to Mithriel's point about being 'fair and reasonable'.

    I have no problem with attacking Sharpe's view of CFS, but I don't think we should do so using out of context quotes - even if we think that doing so serves to reflect his true beliefs.

    As I read the letter there were a few other quotes which I dimly remembered being misleading, but I didn't really want to get into checking them all out, especially as doing so with the Sharpe quote does not seem to have been terribly productive.

    I didn't really want to get into a lengthy debate over this. I've shown that the Sharpe quote was out of context (with thanks to Dorothy for providing the link). Some people wil think that this is okay, some will not. I've explained why I think it's a bad idea.
     
  5. Sparklehorse

    Sparklehorse *****

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    If you want to know "Esther's" reason d'etre then all you have to do is look through all of the many posts she has made on here and you will very soon see a recurring theme and an agenda with obvious motives. Frankly it's getting very boring now. I just console myself with the fact that what she endlessly spouts on about matters not a jot. Sometimes people are not all they seem. (Last sentence removed by moderator - personal insult)
     
  6. Daisymay

    Daisymay Senior Member

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    Agree Sparklehorse, let's get on witrh the issue at hand, here is an important alert from the IACFSME on the same topic, plus a letter of concern from the IACFSME to the DSM-V task force.

    http://www.iacfsme.org/

    DSM-5 May Include CFS as a Psychiatric Diagnosis

    March 25, 2010

    Important Alert to the CFS/ME Community:

    The DSM-5 Task Force of the American Psychiatric Association is asking for public comment to their proposed DSM-5 manual of psychiatric diagnoses scheduled for release in 2013. We are concerned about the possibility of CFS/ME being classified as a psychiatric disorder, based on comments made in their Work Group on somatoform disorders (see letter below). Of course, such an action would be a major setback in our ongoing efforts to legitimize and increase recognition of the illness.

    We urge you to submit your comments about this disturbing possibility to the DSM-5 Task Force ( www.dsm5.org). You only need to register on this website to submit your comments. (Once you have a login, click on Proposed Revisions, and then Complex Somatic Symptom Disorder. At the bottom of page is a section for public comments.) Comments written from the perspective of a working professional (researcher, clinician, educator) will have the most influence.

    Comments must be submitted by April 20 th.

    Thank you.

    Fred

    Fred Friedberg, PhD
    President
    IACFS/ME



    Letter To the DSM-5 Task Force:

    On behalf of the board of directors and the membership of the International Association for Chronic Fatigue Syndrome (IACSF/ME), I would like to express my deep concern about the possible reclassification of CFS as a somatoform disorder in DSM-5. Although the proposed new category of Complex Somatic Symptom Disorder (CSSD) appears reasonable, we are concerned about CFS, a complex illness condition, becoming a subtype of CSSD or a distinct stand alone psychiatric diagnosis. We base our concern on comments by Dr Simon Wessely (DSM-5 Work Group; September 6-8, 2006) who concluded that “we should accept the existence …of functional somatic symptoms/ syndromes …[apart from depression and anxiety] and respect the integrity of fibromyalgia, irritable bowel syndrome, chronic fatigue syndrome, and their cultural variants.” This comment suggests the possibility of a new DSM-5 somatoform diagnosis that subsumes CFS as one manifestation or subcategory.

    It is the position of the IACFS/ME that placing CFS in the new category of CSSD would not be reasonable based upon the body of scientific evidence and the current understanding of this disease.

    The classification of CFS as a psychiatric disorder in the DSM-5 ignores the accumulating biomedical evidence for the underpinnings of CFS in the domains of immunology, virology, genetics, and neuroendocrinology. Over the past 25 years, 2,000 peer review CFS studies have been published. The data support a multifactorial condition characterized by disturbances in HPA function, upregulated antiviral pathways in the immune system, and genetic abnormalities. Unlike clinical anxiety and depression, psychotropics are generally ineffective for CFS and standard medical advice to exercise and rest or resume activities often leads to symptom worsening. In contrast to clinical depression, motivation is much less affected in CFS and the desire to be active remains intact. Furthermore, large differences in gene expression have been recently found between CFS and endogenous depression (Zhang et al., 2009)

    Although biomedical research to elucidate the mechanisms of CFS is a work in progress, the medical uncertainties surrounding CFS should not be used as justification to classify it as a psychiatric illness. As stated by Ricardo Araya MD: “The absence of a medical explanation [for an illness] should not confer automatic psychiatric labeling (Sept.6-8, 2006; Somatic Presentations of Mental Disorders; DSM-5 Work Group).”

    With respect to DSM-5, we support a recent editorial in the British Medical Journal by Dr. Allen Francis (2010), chair of the DSM-IV task force, who stated that any new DSM diagnosis should be based on “a careful risk-benefit analysis that includes ….a consideration of all the potential unintended consequences (p. 492)”. The likely unintended consequences of a CFS diagnosis in the new DSM will be increased stigmatization and even lower levels of recognition by primary care physicians and the medical community in general. As a result, we believe such an action would be counterproductive to our ongoing efforts to educate physicians about the assessment and clinical care of these patients.

    The IACFS/ME is an organization of more than 500 biomedical and behavioral professionals whose mission is to promote, stimulate, and coordinate the exchange of ideas related to CFS research, patient care, and treatment. We support scientific advocacy efforts for increased research funding. We also support public health policy initiatives to increase the recognition and reduce the stigmatization that continues to plague these debilitated and medically underserved patients.

    Thank you for your attention.

    Sincerely,

    Fred Friedberg, PhD
    President
    IACFS/ME
    www.iacfsme.org
     
  7. Mithriel

    Mithriel Senior Member

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    I believe this revision is one of the reasons that wessely had to rush trough a negative study of XMRV.

    The possibility that XMRV could be a cause of CSF would mean it had to be left out. Now thye can sya it has been disproved.

    Mithriel
     
  8. Daisymay

    Daisymay Senior Member

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    Yes highly likely and also another possible reason why the PACE results are coming out sooner than initially expected.

    Daisymay
     
  9. Jody

    Jody Senior Member

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    Sparklehorse,

    Let's stay with the topic at hand. Your comments about Esther are inappropriate. Please don't continue along this line.
     
  10. Mark

    Mark Acting CEO

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    So I see the heroic troll-hunters are still with us. :( I wonder who these people really are, and what their real agenda is? Whatever their intentions, their impact on the cause of ME/CFS advocacy is quite devastating, so it's just about possible they're doing it deliberately. Perhaps they want to stifle debate within the community, and thus prevent constructive criticism from improving the quality of our work? Or perhaps they just want to foster an atmosphere of fear and mistrust by encouraging us to believe that we are surrounded by spies from the dark side who are trying to manipulate us?

    I'm afraid that's probably not it though. I think they really believe in what they do. The only explanation I can see - beyond the historical events that have given rise to the phenomenon -is a black-and-white mindset, in which anyone who attempts to critique a point of detail made by a friend, must therefore be an enemy, regardless of anything else they may say. It does make life very difficult for those of us who seek only the truth, and see more value in constructively criticising our friends than in preaching to the converted.

    Like Sparklehorse, I do indeed detect in Esther12's posts recurring themes, and even an obvious agenda. I frequently see Esther12 picking up on inaccuracies, inconsistencies, self-destructive strategies and unjustifiable assertions in material intended for the wider public, and I see an obvious agenda to try to impress on the community the standards necessary if we want to be taken more seriously.

    One would also need a huge pair of blinkers to fail to see Esther12's consistently strong opposition to the somatisation theorists, her desire to see the case against them put forward in a rigorous way, and her intellectual curiosity in attempting to get to the root of the fundamental malfunction in their thinking.

    Perhaps, though, one might also need a grounding in philosophy and psychology to understand these points. I do have that grounding, and Esther I think you have absolutely hit the nail on the head in highlighting the moronic way that the CBT proponents interpret the implications of 'mind-body' issues. Like much of the wider population, they seem to be so excited about the amazing idea that the mind and body interact, that they wander into subtle but dangerous extremist views through yet more black-and-white thinking. I have come to exactly the same conclusion myself, that the root of their malfunction is precisely that philosophical blunder. In a wider context, I call this malfunction 'the american religion' - the idea that anyone can do anything they want if they would only put their minds to it. The idea that the power of the individual mind is paramount, and there is nothing it cannot do. The power of positive thinking. As a self-help tool, or as a motivational tool, it's clearly very effective, but as a basis for policy, it's the devil's own best-kept secret. The key to handling this you-can-do-anything-you-want philosophy, it seems to me, is to never completely lose sight of the fact that it isn't actually true...


    But anyway, in an attempt to illustrate just how simple, obvious, and blindingly accurate Esther12's point is to any neutral observer who checks up on Sharpe's original comments, here are those quotes again, in date order.


    Michael Sharpe, 1999:
    Michael Sharpe, 2005:
    Hooper/Williams:
    Esther12:
    Sadly, I have to finish by saying what should not need to be said, lest my post be considered evidence of political incorrectness...

    I am no friend of Michael Sharpe, and I'm quite prepared to believe that he really does hold the view ascribed to him by Hooper and Williams. I don't believe that yet, because in the evidence presented to me in support of the proposition he clearly states the exact opposite, but if a better case can be made against him in this respect, then it certainly should be.

    And I mean no disrespect to Hooper and Williams in supporting Esther12's point: their work over the years is of an extremely high quality and their contribution is rightly legendary. That's right, it is possible (for me at least) to believe that, and at the same time to believe they got it wrong in the respect of that particular Sharpe quote. Even more confusing, like Esther12 I'm even able to simultaneously believe that I may be completely wrong about this strategic point - maybe unfair quotes really are an effective strategy sometimes!
     
  11. Mark

    Mark Acting CEO

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    Just remembered a relevant anecdote which has always amused me...

    Once upon a time, many years ago, I was interested in the ideas of radical theologians...

    So I was well aware of the work of David Jenkins, the controversial Bishop of Durham, at the time when he made it to the front page of the Sun with an outraged headline claiming that his Easter sermon had described the resurrection as "A Conjuring Trick With Bones".

    Those few who came to learn the full context of the quote were somewhat startled to find that the full sentence he had spoken was (roughly): "The resurrection is much more than a conjuring trick with bones".

    The point he was making was that the value, point and purpose of the resurrection story lay in its mythological meaning, and that the argument over whether it really happened or not completely misses the point of the story. The phrase 'conjuring trick with bones' was intended to highlight how trivial that argument is.

    However, it may well be fair to say that Jenkins, if pressed, and if honest, would probably have to admit that he didn't really believe the physical resurrection had actually happened. He never actually did admit that, to my knowledge, and his true philosophical position as I understand it was as I've just described: he believed this was simply the wrong question to ask, and he refused to address it. He preferred to focus on what he saw as the important question: what the resurrection means now, today, for us.

    Now Jenkins was reported as having described the resurrection as "a conjuring trick with bones", when really he had actually said it was NOT a conjuring trick with bones. Nevertheless, the interpretation of the Sun headline left in the minds of the general population may have been broadly accurate: he (perhaps) didn't positively believe in the physical resurrection.

    In conversation with him, the quote "If I have anything else I feel needs saying, I'll just provoke the press again! :D" sticks in my mind, and my overall impression was that he was indeed very much in control of the situation and quite untroubled by the misquote by the Sun.

    So anyway, The Sun got away with quoting somebody as saying the exact opposite of what they actually said, and - miraculously - everybody went away with a fairly accurate impression of the Bishop's views despite the misrepresentation of his actual words.

    So perhaps, by analogy, the Sharpe quote won't matter - if it really does represent his opinion despite being the opposite of what he actually said on that occasion, or if the paper receives a similar level of scrutiny to The Sun...

    After all, The Sun got away with it, and if it's good enough for The Sun, it's good enough...no, hold on, that can't be right...:D
     
  12. parvofighter

    parvofighter Senior Member

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    Back to Prof. Hooper and Margaret Williams' DSM V submission PLEASE!

    Isn't this thread about the DSM V submission?
    Professor Hooper and Margaret Williams are to be commended and thanked for their thoughtful and detailed evisceration of the proposed DSM V changes to position ME/CFS firmly in the trenches of somatoform illness. Let's keep this thread in perspective. Hooper and Williams wrote this submission on behalf of The 25% ME Group - the group most severely affected by this devastating neuro-immune disease. The sidetracked discussion of one quote - given the stark reality that the context of CBT/GET is an outright danger to these desperately ill patients in the 25% - and that it is possibly a no-brainer whether Sharpe is a somatisation theorist (quote or no quote) - illustrates how readily, important discussions can be sidetracked on this forum.

    Splitting off irrelevant but otherwise important discussion

    Whether Sharpe's inflammatory mini-quote is representative of his views in general should be a separate thread! And maybe we also need another thread to debate whether Sharpe et al ARE somatisation theorists. That one would be lively!:Retro smile:

    But given his other publications, it is entirely reasonable to be deeply concerned about the overarching theme of his work: how he proposes to "treat" these 25% patients. Any patient with severe ME is fully aware of the stark reality that the shamans of ME "treatment" by CBT/GET are not just unhelpful - they're downright dangerous. Who am I going to listen to, when I decide whether to participate in GET:

    • My cardiologist who says of my ME-associated viral heart disease: "under no circumstances over-exert yourself physically, or you will develop permanent heart damage"; and
    • Immunologists and virologists who intone that overexertion in ME can produce irreversible immunological damage
    OR​

    • CBT/GET enthusiasts (of which Sharpe is just one), who pose a direct and tangible threat to ME patients - particularly those in the 25%?

    • And there's that other issue of common sense. Let me see. Do I listen to some famous psycho-acolyte, or to my body and my history? I used to love playing 2 hrs of squash, 5 days a week. Windsurfing in the same day as playing tennis. Skiing my butt off. Biking for hours. I dream about canoe portaging, hiking remote stretches of Canada, the feel of water as I swim lengths at the pool. Now I debate whether I'm up to having a shower every 3 days - while sitting in a chair. If I have the shower, I'm often too exhausted that day to have dinner with my family. Swollen uvula (U.V.U.L.A., you sickos), sore throat, achey achey legs that prevent me from sleeping result from trivial activity. Angina. Weakness and tremor. Memory crash, forgetting what day of week it is or where my kids are that day. Whether Sharpe doesn't like that quote is irrelevant in the larger context that he lives and breathes the somatoform approach - treat ME with CBT/GET. (Or am I wrong - if so, let's start another thread!) So back to Dr Hooper's opus - it represents my interests; it's urgently necessary; and it should not be allowed to be side-tracked. Intelligently discussed - by all means. But THIS death spiral into minutiae - c'mon.
    The dissection of this one quote is a wonderful example of how important topics can get unwittingly cottonballed. This thread started off as an important topic, then spiraled into perseveration on one area of minutiae - which when considered in the broader picture of this post - is a separate topic and indeed irrelevant to this DSM submission. Yes, irrelevant, and supported by what Mark (thanks:Retro smile:)said:
    Highly laudable, but this sidetracks the core topic. The issue of whether Sharpe is a somatisation theorist (independent of being quoted or "mis"quoted) deserves a separate thread - don't you think? Or a constructive argument written to Dr Hooper on why any reference to Sharpe should be purged.

    Moderators: Please address the need to split this thread! I see 4 potential splits:

    • Discussion on Professor Hooper/Margaret Williams' DSM V Submission
    • Discussion of whether his quote fits in the general context of Sharpe's work proposing CBT/GET for ME patients
    • Who are the somatisation theorists? And how clear and consistent is their message?
    • How to put the case against the somatisation theorists in a rigorous way (Esther, can we entreat you to start this thread?)
    Strong statements are great if they are backed up rigorously. Otherwise, they can tend to come across as intellectually lazy, or gratuitous manipulation - particularly of the vulnerable 25%.

    I for one would very interested in a separate thread on our desire to see the case put against the somatisation theorists in a rigorous way. But let's get back to the topic of discussing the DSM-V submission!
     
  13. Daisymay

    Daisymay Senior Member

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    Well said Parvo, this submisison is extremely important, by far the most thorough and compelling of the submissions so far, giving lots of detail on the thinking and shenanigans of the psychs leading up to this point where we are at risk of being classified as having a psychaitric disease plus rational arguements against the inclusion of ME as a CSSD.

    If ME/CFS were to be classified as a psychaitric disease then the implicatons would be huge for us all and for researchers trying to get funding for biomedical research , it would be nigh on impossble for them. And where would that leave us?

    People would only be able to get benefits and insurance payouts at the lower rates given for psychiatric diseases.

    etc etc etc - this is a really big issue.
     
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Beautiful!!

    Thank you Malcolm Hooper and Margaret Williams!!

    :hug: :victory: :D
     
  15. oerganix

    oerganix Senior Member

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    Yes, it's called CYA: Cover your arse. It's used to extricate the foot from the mouth when one's true statements and attitudes have been exposed to daylight, after they've been spoken in what was thought to be the dark company of mutual supporters.

    The larger context of his speech that day, and the years before and after that speech deserve to be taken into account, not just the sentence or two before or after.

    From the fumblings reply, more "context" from Sharpe:
    "“The majority of patients with CFS have no doubt how they prefer their conditions to be seen….the vehemence with which many patients insist that their illness is medical rather than psychiatric has become one of the hallmarks of the condition." - your same lecture at Strathclyde University 1999 ""
     
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
    That's a good one. hadn't heard it before.
     

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