The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Myth: ME is a mental illness + reactions Vink and Chalder/Sharpe/White

Discussion in 'General ME/CFS News' started by Effi, Mar 23, 2017.

  1. Effi

    Effi Senior Member

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    I hadn't seen this posted anywhere, this story is a few weeks old. Observant is a Dutch magazine that has a section called 'myth busters', which is "a series in which academics shoot down popular myths on complex topics". In this article Cohen Tervaert explains why ME is NOT a mental illness.

    This is pretty significant, as Cohen Tervaert is a member of the ME Committee of the Dutch Health Council, responsible for creating new guidelines on treatment of ME in the Netherlands. (The majority of the members is strongly in favor of the BPS approach. There is a petition to oppose the composition of the Committee. It can be signed until the end of this month, so if you haven't yet, PLEASE DO! here)

    In the meantime, both Mark Vink and Chalder/Sharpe/White reacted to Cohen's article.

    Original article by Cohen Tervaert: Myth: ME is a mental illness
    http://www.observantonline.nl/Home/...w/articleId/12027/Myth-ME-is-a-mental-illness

    Mark Vink's reaction (in Dutch):
    http://www.observantonline.nl/Home/.../Gedrags-en-bewegingstherapie-zijn-schadelijk

    Google Translate link: https://translate.google.com/translate?sl=nl&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=http://www.observantonline.nl/Home/Artikelen/articleType/ArticleView/articleId/12100/Gedrags-en-bewegingstherapie-zijn-schadelijk&edit-text=&act=url

    Chalder/Sharpe/White's reaction: 'Myth-busting the myth busting' :rolleyes:
    http://www.observantonline.nl/Home/...w/articleId/12101/Myth-busting-a-myth-busting
     
  2. Cheshire

    Cheshire Senior Member

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    However false Chalder, Sharpe and White's assertions still are, doesn't that look like a step back? They seem to be giving up on their claim of recovery.

    Oh, and BTW, the very hopeful message patients are waiting for is you quitting the field of ME research.
     
  3. Yogi

    Yogi Senior Member

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  4. Effi

    Effi Senior Member

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    correct :) (maart=March)
     
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  5. Yogi

    Yogi Senior Member

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    Thanks so the original was 8th March and the PACE response just came out yesterday on 22nd March.

    The PACE authors will be busy bees given the sheer number of articles that have come out last week.

    If they are going to be responding to every letter they better get down to the post office and stock up on stamps. The post office queue near QMUL will be very long for the next few weeks given the international criticism building up!!
     
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  6. KME

    KME

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  7. hixxy

    hixxy Senior Member

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  8. CCC

    CCC Senior Member

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  9. Barry53

    Barry53 Senior Member

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    Interesting bit of gobbledegook really. Suggests a spectrum of possible definitions for recovery, an extreme of which could be death. :rolleyes:
     
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  10. Jan

    Jan Senior Member

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    It makes me so angry every time I hear them say these 'treatments' are safe. Those who have been harmed really should sue in order to shut these people up and so that the rest of the world still using these treatments sit up and listen. We should all collectively try to bring this about. As I've said before I'd be more than happy to contribute to legal costs if it could be crowd funded.

    These treatments are NOT SAFE, they ARE STILL HARMING PATIENTS to this day! So many are culpable, NICE should have withdrawn these treatments from their guidelines as soon as the reanalysis was completed. It is negligent to allow patients to continue to be harmed.
     
  11. Esther12

    Esther12 Senior Member

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    They only want to respond in venues where they think they can get away with bullshitting people.
     
  12. Snow Leopard

    Snow Leopard Hibernating

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    Last time I checked, no difference in objective measures in an unblinded trial and even the difference found on questionnaires disappeared at the long term followup, suggests there is a lack of evidence suggesting that CBT or GET are effective at all.
     
  13. adreno

    adreno PR activist

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    Like the recovery definition doesn't matter for the outcome?
     
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  14. Snow Leopard

    Snow Leopard Hibernating

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    The fact that they think "recovery" is subjective and possible to water down, it shows they don't have a commitment to providing the highest quality evidence.
     
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  15. MEisnotMUPS

    MEisnotMUPS

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    David has left a comment for the PACE authors in the comment section below the article
    http://www.observantonline.nl/Home/...w/articleId/12101/Myth-busting-a-myth-busting


    David Tuller
    The PACE investigators continue in their refusal to actually address the key concerns raised about their study. First, they continue to refer to this as a "secondary" paper. While it is true that the PACE authors for reasons only they know designated "recovery" as a secondary outcome in the PACE protocol, "recovery" is surely not of secondary importance to patients, so dismissing the paper's significance is this way is unwarranted.

    They dismiss the difference in recovery outcomes between their paper and the reanalysis as just a matter of opinion, because the reanalysis used stricter guidelines. They fail to mention that the reanalysis only used the specific criteria the PACE investigators outlined in their own protocol, and then abandoned in favor of ones that allowed them to report statistically significant recovery rates. They received absolutely no approval from oversight committees for this redefinition of recovery.

    In their detailed protocol, they included four very clear criteria for recovery. In the paper as published, every one of these four criteria was significantly weakened, in ways documented by Wilshire et al. For two of the four criteria--physical function and fatigue--participants could get worse and yet still meet the "recovery" thresholds because that revised threshold represented worse health than then entry criteria. Thirteen percent of the trial participants met one or both of these "recovery" criteria at baseline.

    They have referred to these thresholds as being within the normal range. Yet this is an utterly dishonest argument. They generated their absurdly expansive "normal ranges" by using the wrong calculation to calculate them. They applied the method of finding the normal range for normally distributed populations--the mean plus/minus one standard deviation--and applied it to population samples that they knew were highly skewed in a positive direction. Dr. White himself, in a 2007 paper he co-wrote, had explained how using this method to determine a purported "normal range" for the SF-36 physical function scale yielded distorted findings. This caveat was not included in the Lancet or Psychological Medicine papers.

    The authors themselves know that what they are referring to as a "normal range" is not the standard statistical "normal range" that includes two-thirds of the values but a wildly generous "normal range" that includes upwards of 90 percent of all the population values. That's why they ended up with the absurd "normal range" of 60. The same strategy applies to the fatigue normal range--they developed in the same intellectually dishonest way, and yet continue to refer to it as a "normal range." They have never explained why they used the wrong statistical method to develop normal ranges from highly skewed samples. Moreover, Dr. Chalder has never explained why she referred to these absurd "normal ranges" as "getting back to normal" in the Lancet press conference.

    They have recently argued, in response to Wilshire et al, that it doesn't matter that some participants were recovered on the physical function or the fatigue outcomes at baseline because there were other recovery criteria. This is truly a bizarre response for researchers to make. It is also a serious violation of the rules of honest scientific inquiry. It is unclear to me why we all have to waste so much intellectual time and energy simply to demonstrate that studies in which participants can be disabled and recovered simultaneously on key indicators should never have been published and, once published, need to be retracted immediately. The PACE authors have no scientific ground to stand on.
     
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  16. Solstice

    Solstice Senior Member

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    Yet another backfire, marvellous.
     
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  17. alex3619

    alex3619 Senior Member

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    As I have commented on before, how is this not sufficient evidence to justify a formal investigation of scientific misconduct?

     
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  18. adreno

    adreno PR activist

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    It should be. But the authors are clearly protected by the institutions their research supports.
     
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  19. alex3619

    alex3619 Senior Member

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    I think that might actually be only a part of it. I think its more a sign of a failure in medical culture, and of the bridge between medicine and science. There are multiple overlapping reasons, and I think they mutually reinforce. Or to put it in BPS terms, this is the social part of their psychogenic construct.
     
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  20. adreno

    adreno PR activist

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    Probably true, as this is the case with most complex problems. However, I do believe that the main factor is that not many outside the patient community are interested in seeing this situation remedied.
     
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