Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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"Is there a way forward for CFS/ME?" (Nov 13 MedicalNewsToday (MNT) article)

Discussion in 'General ME/CFS News' started by Tom Kindlon, Nov 13, 2015.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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  2. Tom Kindlon

    Tom Kindlon Senior Member

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    I submitted this comment:

     
  3. worldbackwards

    worldbackwards A unique snowflake

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    It's the glib, "my word is God" way that he trots this bollocks out that really annoys me. Beyond doubt? Who's doubt would that be?
     
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  4. Tom Kindlon

    Tom Kindlon Senior Member

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    Given that ME or CFS often takes years to be diagnosed, I imagine a lot of the "previous" cases were times when a person already had ME/CFS. Having undiagnosed ME/CFS could increase the risk of depression.
     
  5. A.B.

    A.B. Senior Member

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    Wessely desperate to stay relevant?
     
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  6. user9876

    user9876 Senior Member

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    Or doctors have mis-diagnosed ME as depression for a number of years which would lead to correlations
     
  7. Sasha

    Sasha Fine, thank you

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    I also submitted a comment.
     
  8. Sea

    Sea Senior Member

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    Once again Wessely pretends that the CBT offered to ME/CFS patients is like that offered in other illnesses, which makes us look silly for refusing it
     
  9. Sasha

    Sasha Fine, thank you

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    I addressed that in my comment:

    Thank you for your article. It is good to see biomedical research being given prominence.

    The PACE trial in fact has just shown null results at long-term follow-up. There was no difference between groups, and since all groups received standard medical care, the addition of CBT and graded exercise therapy clearly had no effect at all. The PACE authors' promotion of the findings as successful has caused great anger among scientists as well as patients. Professor James Coyne, for example, has written a damning critique on his Public Library of Science blog.

    Six prominent scientists today published an open letter to The Lancet, which published the study, saying "the study suffered from major flaws that have raised serious concerns about the validity, reliability and integrity of the findings."

    http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/

    The CBT used in the trial and imposed upon patients through the NHS is not normal CBT designed to "help patients to cope with the challenges they face" as Professor Wessely seems to suggest. It is specifically based on a model of the illness in which there in no longer any pathology and patients are merely deconditioned and must be encouraged to exercise their way out of it. This is explicit in the PACE Lancet paper.

    Over 10,000 people have signed a petition calling for the misleading claims made in PACE to be retracted:

    http://my.meaction.net/petitions/pace-trial-needs-review-now

    To answer your question: there is a way forward for ME/CFS, but it requires psychiatrists to get out of the way.​
     
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  10. Tyto alba

    Tyto alba

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    Repeat ad infinitum.
     
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  11. Hutan

    Hutan Senior Member

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    Actually this article overall isn't bad. The writer has made an effort I think; information about evidence that ME/CFS is a biomedical condition is given.

    About PACE; the CBT result is prefaced by 'the study authors say'.
    @Tom Kindlon's and @Sasha's submitted comments were certainly needed. Never mind the fact that PACE included more able patients - the writer, like many, seems to have missed the fundamental fact that the followup PACE report showed that CBT and GET were no better than doing nothing much at all.

    Yes, it's interesting how Wessley is reframing CBT as a support to people who in fact have a real, biomedical illness. If only he would be consistent on that line, that would be a sort of victory for us.

    But, if I knew nothing much about ME/CFS, I would come away from this article pretty convinced that there is a real underlying pathology to the illness. And there's no mention of death threats or unreasonable patients. :)
     
  12. Sasha

    Sasha Fine, thank you

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    Yes, it's pretty good, overall. But I wish Wessely wasn't everybody's go-to guy for CFS.
     
  13. Vasha

    Vasha Senior Member

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    @Sasha, your comment is excellent. Thank you!

    I think this article is very good. It starts from the right premise:
    " First thought to be a psychiatric disorder, CFS is now recognized as a severe physical illness, although the uncertainty of its origin has plagued progress in diagnosis and treatment.

    However, growing evidence of physiological biomarkers is now emerging."

    And then walks through quite a bit of recent research.

    The reporter didn't know/didn't focus on the fact that CBT as promoted in the UK for ME/CFS is not about coping but about "false" illness beliefs, and missed some main issues with PACE, so @Sasha's and @Tom Kindlon's comments are quite important.

    I am having some trouble commenting (something to do with their Javascript) but am trying.

    Also, please note that the article has a star rating option-- it has an option for patients/public, and one for health professionals. I was able to give it 4 stars. I've noticed that others of their articles that are pretty accurate (never perfect, of course), get low star ratings from health professionals. Sigh. In any case, it seems a good idea to give the author a good star rating if you agree that she did quite a good job.

    Vasha
     
  14. Vasha

    Vasha Senior Member

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    Yes @Hutan I noticed that as well--and thought the first half of that sentence was also interesting:

    "Prof. Wessely, who pioneered CBT for CFS/ME patients, told MNT that while there is clear evidence for an underlying biological cause for the disease, as seen in neuroendocrine profiles, CBT can help patients to cope with the challenges they face.

    This is awfully optimistic (especially after that whole "PACE is a cruise ship" apology for the PACE trial) but maybe he is trying to make room to evolve.
    Vasha
     
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  15. worldbackwards

    worldbackwards A unique snowflake

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    He's a consummate politician. If any of the psychiatrists come out of this on top, and probably claiming "I was saying this all along", it will be him.
     
  16. user9876

    user9876 Senior Member

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    I was wondering if Wesselys quote
    might be explained by the over use of the HADS scale. I think it was used in PACE and Crawley likes it. Coyne condemned it a few years ago
    http://www.jpsychores.com/article/S0022-3999(12)00093-1/abstract
    It doesn't measure depression well.
     
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  17. SOC

    SOC

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    Only in the UK, thank goodness. Fortunately, more of the rest of the world is heading towards the notion that he "doesn't have the skillset."
     
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  18. SOC

    SOC

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    Evolve, my behind! ;) I'd say it looks more like CYA
     
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  19. Vasha

    Vasha Senior Member

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    Hee hee @SOC. I'll take it! CYA can be a useful thing. :)

    Vasha
     
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  20. Vasha

    Vasha Senior Member

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    I think the comments are all held for moderation. In any case, I can't see any. But I did manage to send one for posting (a bit longer than I intended):

    Ms. Brazier, thank you for this thorough article, and especially for walking through some of the recent biomedical research into ME/CFS.

    Much is promising today, including:
    -the Institute of Medicine's comprehensive report, which reviewed thousands of studies, and concluded: "The primary message of the committee’s report is that ME/CFS is a serious, chronic, complex, systemic disease that often can profoundly affect the lives of patients." The IOM called for much more research funding, expressing surprise that there has been so little to date.
    http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx

    and

    -the NIH's recent announcement in response to the IOM report that they will "ramp up" biomedical research into this illness, which has been woefully underfunded (at about $5 million a year for many years, less than hay fever).

    As others have pointed out, the article does miss some of the biggest questions surrounding the scientific validity of the PACE trial. It also misses the fact that "CBT," as discussed in relation to PACE-style treatment, is not about coping, but about overcoming "false illness beliefs" -- i.e., thinking oneself healthy. CBT to help patients cope, as in other serious diseases, might be helpful. But the CBT pushed on ME/CFS patients in the UK is wholly inappropriate for this physical disease. ME/CFS patients can no more "think" themselves healthy than can multiple sclerosis, AIDS, or cancer patients.

    Beyond the research noted in this article, there are other promising threads, including:
    -exercise physiology research, gene expression research, and other work, which is beginning to sketch out why exertion (which may be only getting up to use the bathroom, or for the most seriously ill, rolling over in bed) causes adverse physiological reactions in ME/CFS patients.

    -research into treatment for ME/CFS, most excitingly, research into rituximab, a monoclonal antibody used in B cell cancers and autoimmune diseases, which in early trials has shown a 60-70% success rate for improvement, and is now in a Phase III trial.

    -research into causes and triggers, which could someday help prevention. If rituximab continues to show results, for example, this suggests a B-cell-mediated autoimmune disease in responders.

    Again, thank you for this helpful article. Hopefully, there will be many more answers to report soon.
     
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