Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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CFS prevalence is grossly overestimated using Oxford criteria compared to CDC (Fukuda) criteria

Discussion in 'Latest ME/CFS Research' started by AndyPR, Jul 21, 2017.

  1. AndyPR

    AndyPR Cookies for Tired Sam

    Abstract only - http://www.tandfonline.com/doi/abs/10.1080/21641846.2017.1353578?journalCode=rftg20
     
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  2. Webdog

    Webdog Up to 91% remain undiagnosed

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    That's just crazy insane numbers.

    Still higher than I expected.
     
  3. Sean

    Sean Senior Member

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    And they still couldn't get a result in PACE. :meh:
     
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  4. A.B.

    A.B. Senior Member

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    I think they probably actually enrolled a good portion of CFS patients in PACE and FINE. That's why they got poor results.

    That they expected good results could suggest that normally their sample is a bit different and responds better.
     
  5. Webdog

    Webdog Up to 91% remain undiagnosed

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    One interesting result not talked about in the abstract is both criteria identify significantly more males than females, in what is usually considered a 75% female disease.

    Even the Fukuda results show 56% male vs. 44% female.
    Any speculation on this? Is this just a shortcoming of inadequate diagnostic criteria or the study methodology? Or do more males than females actually have ME/CFS?
     
  6. A.B.

    A.B. Senior Member

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    Tired workaholics being labelled CFS patients?
     
  7. thijs

    thijs

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    Both numbers seem way too high, compared to other research and to my own experience.

    I used to go to a reasonably sized high school. One time I had a conversation with the school director and he said they never had a CFS patient before. (Out of +- 10.000 students)
    Doctors also don't seem to be that experienced with ME/CFS. And I have never spontaneously met another patient in real life.
     
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  8. Snow Leopard

    Snow Leopard Hibernating

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    Keeping in mind this study lacked proper medical screening and confirmation. Prevalence of chronic fatigue syndromes due to a totality of causes minus the specific exclusions:

    Also,

     
  9. Snow Leopard

    Snow Leopard Hibernating

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    Has anyone found the actual list of questions from the "CFS Severity Questionnaire"?
     
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  10. Woolie

    Woolie Senior Member

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    Or just that fixing some of the bigger methodological problems of previous studies reduces the degree of bias favouring positive results.

    If you argue that CBT and GET are probably effective for the "right" patients - and that's someone else not us - you are buying into the very same bullshit we are all fighting against. This idea of a helpless, psychologically distressed patient who feels tired due to deconditioning, that can't organise themselves out of this state without someone to hold their hand.

    There is just no evidence that such a patient group exists.

    More importantly, by implicitly accepting this dangerous idea - which we do every time we make a "diagnosis" argument in relation to CBT/GET studies - we are deflecting the problem from ourselves and pointing the finger at others.

    Not okay.

    As far as I can see, there is no evidence that even a small portion of patients benefit from CBT or GET for fatigue, and that individual cases of improvement (beyond self-report) are probably spontaneous remissions.
     
    Last edited: Jul 21, 2017
  11. Woolie

    Woolie Senior Member

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    PS I think this issue of diagnosis is important for finding answers to what causes our condition.

    I just don't think there's any fatigue condition that can be reversed through GET - one where people are just deconditioned and so stupid and helpless that they can't recondition themselves without hand-holding.
     
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  12. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    It was always amusing to me, how PACE was based on mental illness criteria they created to allow for ME denial, but when intentionally using alleged mentally ill patients for PACE, CBT/GET still failed, thus proving the therapy is utterly useless no matter who you use it in.

    This failure of ethics and politics combined, couldn't have happened to a nicer bunch of people...
     
  13. A.B.

    A.B. Senior Member

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    I don't think that this model has any merit. CBT/GET could work for some cases of depression though.

    In PACE and FINE it doesn't seem to work. I think there were earlier studies where it seemed to work better. Is that because the sample was very different or because the methodology even worse?
     
    Last edited: Jul 22, 2017
  14. Forbin

    Forbin Senior Member

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    From anecdotal accounts here and elsewhere, it seems as though when people experience a sudden remission they are as likely as not to over-exert themselves (potentially prompting a relapse). This does not sound like the expected "dip your toe in the water" response of people who are fearful of a deconditioned reaction to exercise. It sounds like people who have had the chains taken off.
     
  15. Solstice

    Solstice Senior Member

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    I've only seen CBT/GET trials with terrible methodology. Someone on another thread said there were 3 dutch studies using actometers and they all came up empty. Every other trial seems to have the trifecta of unblinded, self-reported measures and lot's of indoctrination to change said self-reported measures.
     
  16. Sean

    Sean Senior Member

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    https://www.ncbi.nlm.nih.gov/pubmed/20047707

    No correlation between self-reported changes in the fatigue score and changes in actigraph scores means that there is no possible causal connection between changes in perception due to CBT, and activity levels.

    In short, CBT doesn't increase activity levels.

    No therapeutic power also means no evidence for explanatory or predictive power either.
     
  17. Woolie

    Woolie Senior Member

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    Yes, the methodology was even worse. Small samples, no proper random allocation to groups, lots of drop-outs, no active control. By Psyc standards, PACE is quite good.
    The concept of depression is just such a mess. Its a made-up name for a lot of phenomena that are generally bad. I'm not denying the misery and suffering. Just the causal models and the assumption that this is a useful, coherent construct. People who are depressed are almost certainly a heterogenous group. Some will have a biological basis to their depression - something different from ME perhaps, but no more amenable to CBT/GET. Others will have genuinely shit lives without options. Lots of misery and no power. We (generally posh, white middle class) psychologists are great at taking these people and pointing the finger at their negative, maladaptive thoughts etc. As if that were the real problem.

    We just take it as a given that there is such a thing as primarily "psychological" depression, that the person has somehow perpetuated within themselves by negative thoughts or feelings or some such ("rumination" is a popular conception). And these "psychological" factors can somehow can be corrected/reversed through purely psychological/behavioural interventions. This "correction" idea is pretty much the core of CBT. Do we know that CBT works for anyone? I would say no. There is evidence that having someone nonjudgmental to talk to might be a good thing if you're sad and distressed. That's it. All the rest is conjecture and posturing.
     
  18. Woolie

    Woolie Senior Member

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    Sorry, to go off on a rant, @A.B. I'm slightly annoyed right now about a post at Mental Elf from a patient researcher many of us know. The post hints at this person's general view that psychological and behavioural interventions are just perfect for all the crazy patients out there that don't fit her very restrictive definition of what "real" ME is.

    Talk about finding yourself a safe seat and throwing everyone else under the bus.
     
  19. A.B.

    A.B. Senior Member

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    @Woolie thanks for your contribution. I've generally taken the position that whatever people in PACE had, CBT or GET didn't work. Yet the possibility that it might work for a portion of patients still has to be considered. I think it adds to the credibility of our criticism if we're also honestly able to consider views that differ from our own. Why did the PACE authors expect good improvement from CBT/GET? Maybe they have been fooling themselves with poor methodology all these years and that clearly happened to some degree, but another possibility is that maybe there really is a subgroup out there where this approach is somewhat helpful. Maybe some form of depression, maybe graded exercise can speed up recovery when the patient is already in remission. I'm perfectly comfortable with the idea that it's all just nonsense too though.

    I like your rants, please don't stop ;)

    I know who you are referring to and share your views.
     
  20. Cheshire

    Cheshire Senior Member

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    She's not worth your anger. She's ridiculous and nasty.
     

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