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'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

Discussion in 'Latest ME/CFS Research' started by Sam Carter, Jan 31, 2013.

  1. Bob

    Bob

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    I haven't read the everything in this thread yet, so I might be repeating stuff here...
    I was just thinking about the response from White et al...

    White et al (weakly) claimed that it's not possible to rely on employment stats to indicate 'recovery', yet they were happy to rely on the patients saying that they felt 'much better', and SF-36 PF scores that indicate severe disability, to define a 'recovery'.

    If a participant had severe disability, but felt 'much better', then it's a no-brainer... Clearly they were 'recovered'. :confused:

    :rolleyes: :rolleyes: :rolleyes:
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  2. Graham

    Graham Senior Moment

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    6 centres?????? I forgot that. That makes it even worse.

    Let me bore you with the sums.

    The forms state that the assessments were to be carried out over 7 days. So allowing for issuing, using, returning, and collating the data, it would be safe to assume a 2 week cycle. Each centre would have 2 actometers. During the first year, assuming a steady dribble of participants (there can't be a sudden burst because assessment has to take place in the early few weeks, so it cannot be spread out), and realising that they can only use one actometer, as the other has to be reserved for assessment at the end of each patient's year, they would deal with two patients a month. Say 24 a year allowing for holidays, or 5 years to reach their full quota of a little under 120 patients. Then add another year for the final ones to be assessed, and we have a total of a 6 year trial period, assuming that there are no hiccups and the convector belt runs smoothly.

    (They couldn't use both actometers at the start to get things moving, because they wouldn't be able to assess them at the end of the year with only one actometer then available).

    But only 20% of those screened were accepted on the trial, so it seems that recruitment would be patchy. This lengthens the guess of a 6 year period. Any loss or damage to one actometer would really mess up the process.

    When you think how cheap they were in comparison with the total budget, you have to quote John McEnroe, "You cannot be serious!"
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  3. Graham

    Graham Senior Moment

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    If I were in constant pain and suffered from very poor sleep patterns, and the specialist gave me something to ease the pain and give me some sort of sleep, I would tick the box "feeling much better", even though it didn't affect my ability to do things. If I was in agony from massive burns, pain control would improve things no end, but not even begin to be part of a cure.
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  4. Dolphin

    Dolphin Senior Member

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    Good point.

    Also, if a participant has ticked "much better" it means they haven't ticked "very much better" as they don't consider it suitable. which makes me think all or almost all who tick "much better" aren't recovered.

    In case anyone doesn't remember, "very much better" (a CGI score of 1) was the criterion in the recovery outcome measure in their published protocol.
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  5. Bob

    Bob

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    Perhaps it would also be helpful to include 'recovered' in the CGI answers, so that the options are 'much better', 'very much better' and 'recovered'. 'Very much better' doesn't indicate a recovery, esp because it's a relative measure and can only be interpreted subjectively by each participant.
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  6. Graham

    Graham Senior Moment

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    True. In fact I would compare myself as feeling very much better than I did when, before I was diagnosed, I was struggling to stay at work (who would sign me off with no abnormal test results?). But I know that, put back in the same circumstances, I would revert to the same dire straits.
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  7. Dolphin

    Dolphin Senior Member

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    Yes, perhaps.
    My point wasn't that a CGI score of 1 from 7 on this scale [i.e. "very much better"] was perfect but that a CGI score of 2 [i.e. "much better"] wasn't. [Adding a CGI score of 2 was one of the changes made from the protocol].
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  8. Dolphin

    Dolphin Senior Member

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    That's the other thing about recovery: symptoms often have to be provoked. How one feels living a quiet life and not working isn't necessarily the same as how one would feel while working. If you're recovered, one should be able to work.
  9. biophile

    biophile Places I'd rather be.

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    There is a paper which CBT/GET proponents often cite as evidence that the effects are "sustained" in the long-term, although the paper itself demonstrates a mixed bag with effects wearing off and methodological limitations. Anyway, I mentioned it in one of my PEM-inducing posts which you may have not read yet. The authors used full time employment as a criterion for complete recovery, and included PACE's original thresholds for normal fatigue and physical function.

    Deale A, Husain K, Chalder T, Wessely S. Long-term outcome of cognitive behavior therapy versus relaxation therapy for Chronic Fatigue Syndrome: a 5-year follow-up study. American Journal of Psychiatry 2001, 158(12)2038–2042. http://psychiatryonline.org/data/Journals/AJP/3731/2038.pdf

    Re asking patients if they have improved or recovered, I wonder what would happen if, when patients were answering follow-up questions, they were allowed access to their baseline answers/scores for comparison?
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  10. Bob

    Bob

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    Yes, that's a very important issue with ME/CFS.
    I suppose it's one of the differences between 'remission' and 'recovery'.
    The psychosocial lobby don't understand the interplay between activity, symptoms and disability for ME/CFS patients.
    It's an issue that makes welfare benefits systems very difficult to negotiate for ME/CFS patients.
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  11. Bob

    Bob

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    Some interesting online responses to a stupid article in Psychology Today, including an excellent letter by the author and CFS advocate Katrina Berne.

    Psychology Today article:
    http://www.psychologytoday.com/blog/sleep-newzzz/201303/exercise-and-cbt-can-help-chronic-fatigue

    Responses:
    http://www.psychologytoday.com/blog...ise-and-cbt-can-help-chronic-fatigue/comments


    See Katrina Berne's books here:
    http://www.goodreads.com/author/show/125759.Katrina_Berne


    Thanks to Tom Kindlon for flagging it on Twitter:
    https://twitter.com/TomKindlon/status/361832120857018369
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  12. Sean

    Sean Senior Member

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    Not to mention between 'recovery' and recovery.
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  13. alex3619

    alex3619 Senior Member

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    I too am very much better compared to where I was in about 1997. A shift from severe to moderate ME is a huge improvement, and constitutes very much better. Its not even close to recovered though.
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  14. alex3619

    alex3619 Senior Member

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    Yes Dolphin, by using Oxford CFS and ignoring ME diagnoses, plus ignoring the exercise physiology, the focus is on fatigue as a constant phenomenon and ignoring other symptoms. The problem in ME is not about fatigue, but how easily it is exacerbated, and how other symptoms are provoked at the same time. I think a lot can be made about this point in future advocacy.
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  15. alex3619

    alex3619 Senior Member

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    I know at least one person with ME who has worked full time. Its possible for well-managed mild ME. Working, coming home and crashing into bed, spending all weekend resting, taking holidays in spaced blocks so there is recovery time, not having hobbies, sports, exercise ... lots of sacrifices to be able to get to work and get home without collapsing. Working full time is NOT recovery either. Its conflating functional capacity with work capacity, which is what you would expect to be hearing from insurance companies. Work capacity is part of functional capacity, but its not the whole thing.

    Oh, PS, this described me for years, plus I used up all my sick days and had to take leave without pay instead.
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  16. Esther12

    Esther12 Senior Member

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  17. Dolphin

    Dolphin Senior Member

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    From:

    The PACE Trial recovery paper didn't look at different timepoints, so not as flawed as this method. But they both use the same criterion: a "good" result at one timepoint is sufficient to be classed as recovered.





    There's a PR thread on this summary at: http://forums.phoenixrising.me/index.php?threads/when-government-propaganda-masquerades-as-science-on-an-antidepressants-study.9472
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  18. Dolphin

    Dolphin Senior Member

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    I just saw this posted elsewhere on the internet. I saw it previously in a magazine for a local group in England in the early- to mid-2000s. PDW having a weird view of recovery doesn't explain the big changes made in the recovery criteria - he had these views about recovery when the recovery criteria were set:

  19. Esther12

    Esther12 Senior Member

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    "Do you want to go back to the life that gave you ME?"

    I'd do anything to avoid the life that gave me him.

    I'm not convinced it's entirely patient's lifestyle choices which lead to them falling ill and being placed under the authority of quacks though.

    If they'd been honest about the value of their treatments when I'd fallen, I'd have never bothered with them. I can 'manage' being ill just fine on my own.
  20. Mark

    Mark Acting CEO

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    :rofl:
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