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Do graded activity therapies cause harm in chronic fatigue syndrome?

Discussion in 'Latest ME/CFS Research' started by Tom Kindlon, Mar 20, 2017.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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  2. Tom Kindlon

    Tom Kindlon Senior Member

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    ---
    There is a 100-word limit for this journal's abstracts so hard to say that much. Full paper is over 3000 words.
     
    Last edited: Mar 20, 2017
  3. Tom Kindlon

    Tom Kindlon Senior Member

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    Thanks to the reviewers and to those who gave me feedback on earlier drafts.
    :thumbsup:
     
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  4. trishrhymes

    trishrhymes Senior Member

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    Well done Tom.

    The abstract is excellent, but the article is behind a paywall, so I can't access the rest.

    I always suspected those with ME with PEM would have been unable to keep increasing their activity, and would have self protected by not adhering to the set regime, either by cutting drastically back on other activity in order to do the prescribed walks, or by not doing the exercise as they were told to.

    I hope for their sake they did listen to their bodies. In that case there would indeed have been less harm than there might have been, so the trial gives a completely false impression of safety.

    That's yet another reason why the trial was invalid. They should have worn activity meters throughout the trial.
     
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  5. Aroa

    Aroa

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    I am glad to see that written on a paper !!!

    That´s something I will show to some of the doctors who still think GET is the way to go.

    Thank you so much for this great work :)
     
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  6. charles shepherd

    charles shepherd Senior Member

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    Hi Tom

    As you know, there are a number of critical commentaries (including one from CS) on the PACE trial awaiting publication by JHP and it would be really great if both public and health professionals could read them in full

    The MEA has paid for open access publication of the Wilshire paper on reanalysis of the PACE trial data

    Do you know what JHP would change for making these commentaries open access?

    Charles
     
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  7. Tom Kindlon

    Tom Kindlon Senior Member

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    I can't remember seeing the figures (usually you get asked if you want to pay for open access).

    This is what turned up when I did a search but there is a chance it is not correct:
    https://uk.sagepub.com/en-gb/eur/author-information
    You may be able to bargain them down to a lower price.

    Also if you pay from more than one, perhaps you would get a reduction.
     
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  8. Invisible Woman

    Invisible Woman Senior Member

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    Great work, Tom!

    At one point I had a Dr say to me that trying graded exercise was unlikely to do me much harm even if it didn't work. I sent him a copy of the paper you wrote regarding the under reporting of harms on the PACE trial. That was the end of that discussion. While we wait for the PACE edifice to come crashing down, your papers are helping on the "front line".
     
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  9. Tom Kindlon

    Tom Kindlon Senior Member

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    Thank you very much. That is nice to hear as papers, particularly when I am the sole author, take a lot out of me.

    Here's the paper she is referring to. It's open access:
     
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  10. Barry53

    Barry53 Senior Member

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  11. Mary

    Mary Senior Member

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    @Tom Kindlon - thank you so much for all your work on our behalf! It's very much appreciated! :thumbsup:

    I have one question re your abstract where it says:

    When you say "reporting of harms was much better" - do you mean there was more accurate reporting of harm, or that less harm was reported than in other trials? or maybe something else?
     
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  12. Tom Kindlon

    Tom Kindlon Senior Member

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    More accurate reporting of adverse events. Most ME/CFS trials of CBT or GET don't mention the issue at all. People just assume there were no adverse events because overall people on average either didn't deteriorate or else improved on the measures used. However you can have a group of people who improve on average but have people within the group who got worse, or suffered specific adverse events.
     
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  13. Kati

    Kati Patient in training

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    Congratulations, @Tom Kindlon and thank you for your hard work!
     
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  14. Yogi

    Yogi Senior Member

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    I understand from @Keith Geraghty that there will be 10 special commentary articles of the PACE trial in one journal.



    The cost of an individual single print issue would be £6? is that correct? Definitely would be worth buying the paper version (a souvenir copy) and also a great way of thanking the journal.

    https://uk.sagepub.com/en-gb/eur/journal-of-health-psychology/journal200899#subscribe
     
    Last edited: Mar 22, 2017
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  15. user9876

    user9876 Senior Member

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    It will be interesting to see if they can find any supporters who can come up with coherent arguments.
     
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  16. dangermouse

    dangermouse Senior Member

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  17. joshualevy

    joshualevy Senior Member

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    @Tom Kindlon Were you able to find any studies which showed harm from CBT or GET? (By harm I mean worse outcomes or worse adverse effects from CBT/GET as compared to either a control group or another treatment group.)

    Your abstract implies that there were none, but I wanted to ask directly.
     
  18. Invisible Woman

    Invisible Woman Senior Member

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    Given the BPSers hog all the research fund & not just all the psych research funds......I think not. Why look for something you don't want to find? Much better to let well meaning medics (some of 'em are well meaning) assume that there haven't been any studies because none are needed.

    After all - exercise can't possibly harm anyone, right? :rolleyes:
     
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  19. John Mac

    John Mac Senior Member

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    Do you honestly think they would publish a study that showed their treatments don't work?
     
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  20. Jenny TipsforME

    Jenny TipsforME Senior Member

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    It's an ethical issue because people are so pro and against GET. Proponents will design a trial so that only very serious harm is recorded (not necessarily cynically but they don't expect problems). People who already believe it's harmful can't really design ethical research trials because they would be knowingly inflicting harm. This is particularly true when you think of how long people say they are worse (I'm thinking of this quote)

    [​IMG]

    The best evidence is survey data which unfortunately isn't taken that seriously

    [​IMG]
    http://iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx

    I know this is a pipe dream, but what would be enlightening would be a qualitative study of the original PACE participants asking them about their experiences and perceptions of the study.
     
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