1. Guest, clicking here will take you to the 'News in Brief' post for w/c 2nd Dec.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Cochrane Review: 'Exercise therapy for chronic fatigue syndrome', Larun et al. - New version October 2019

Discussion in 'PsychoSocial ME/CFS Research' started by MEMarge, Oct 2, 2019.

  1. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    973
    Likes Received:
    6,201
    Last edited by a moderator: Oct 2, 2019
    Michiel Tack, JaneL, inox and 18 others like this.
  2. Andy

    Andy Committee Member & Outreach

    Messages:
    8,087
    Likes Received:
    58,949
    Location:
    Hampshire, UK
    Article from Cochrane
    https://www.cochrane.org/news/publication-cochrane-review-exercise-therapy-chronic-fatigue-syndrome
     
    JaneL, inox, Liessa and 21 others like this.
  3. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    966
    Likes Received:
    9,308
  4. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    3,311
    Likes Received:
    27,289
    Not for the contested one, where it seems like Larun got her way: "There is moderate‐certainty evidence that exercise therapy was probably more effective than control in reducing fatigue at end of treatment".

    And also "1.8 Self‐perceived changes in overall health
    There is moderate‐certainty evidence that exercise therapy probably increases the number of people who report at least some degree of improvement in self‐perception of overall health at end of treatment"

    They can emphasise that in any PR spin.
     
    Last edited: Oct 2, 2019
    JaneL, inox, Liessa and 19 others like this.
  5. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    966
    Likes Received:
    9,308
    They continue to classify the PACE Trial as having a low risk of bias in terms of selective reporting which is hard to accept.

    This is the comment I made previously:


     
    Last edited: Oct 2, 2019
    JaneL, Medfeb, Marky and 31 others like this.
  6. NelliePledge

    NelliePledge Senior Member (Voting Rights)

    Messages:
    4,298
    Likes Received:
    28,418
    Location:
    UK West Midlands
    Much as NICE Cochrane are saying we now accept the current situation isn’t sustainable but please put up with something unfit for purpose that we will leave in place for a further extended period while we try to come up with something better.
     
    JaneL, inox, Liessa and 25 others like this.
  7. Medfeb

    Medfeb Senior Member (Voting Rights)

    Messages:
    272
    Likes Received:
    2,213
    "Most studies had a low risk of selection bias?"

    How does that fit with AHRQ's conclusion that "Oxford case definition results in a high risk of including patients who may have an alternate fatiguing illness or whose illness resolves spontaneously with time."
     
  8. large donner

    large donner Senior Member (Voting Rights)

    Messages:
    1,051
    Likes Received:
    8,579

    I'm confused has there been an outcome/updated version to the Larun paper or not?
     
    Sarah94, Barry, DokaGirl and 2 others like this.
  9. Wonko

    Wonko Senior Member (Voting Rights)

    Messages:
    3,171
    Likes Received:
    23,230
    Location:
    UK
    Is 'probably' considered a scientific term now then?
     
    LadyBirb, JaneL, inox and 20 others like this.
  10. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
    951
    Likes Received:
    6,779
    Location:
    betwixt and between
    from the correspondence between Atle Fretheim (for the review authors) and David Tovey (Cochrane):

    https://www.s4me.info/threads/cochr...developments-2018-19.10030/page-4#post-179984
     
    JaneL, inox, Liessa and 19 others like this.
  11. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

    Messages:
    1,320
    Likes Received:
    12,440
    Location:
    Belgium
    Probably.

    Thus far, I've only seen the abstract but it looks that there are still a lot of issues that will need to be analyzed and discussed.
     
    Last edited: Oct 2, 2019
    LadyBirb, JaneL, WillowJ and 18 others like this.
  12. strategist

    strategist Senior Member (Voting Rights)

    Messages:
    2,124
    Likes Received:
    20,863
    Disappointing but I think we could all see this coming. Had they been serious, they would have withdrawn it without delay.
     
    Helen, LadyBirb, Channa and 30 others like this.
  13. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    2,391
    Likes Received:
    24,606
    Location:
    Norway


    The revised Cochrane Review on ME/CFS was released today, October 2, 2019. We will share a more in-depth analysis shortly. However, we must immediately emphasize that #MEAction does not support graded exercise therapy due to serious risk of harms to people with ME, and that we are deeply concerned about the conclusions of this review.

    The report’s conclusion is highly problematic:

    “Exercise therapy probably has a positive effect on fatigue in adults with CFS compared to usual care or passive therapies. The evidence regarding adverse effects is uncertain. Due to limited evidence it is difficult to draw conclusions about the comparative effectiveness of CBT, adaptive pacing or other interventions. All studies were conducted with outpatients diagnosed with 1994 criteria of the Centers for Disease Control and Prevention or the Oxford criteria, or both. Patients diagnosed using other criteria may experience different effects.”

    The review states:

    1 "We are uncertain about the risk of serious adverse reactions [in graded exercise therapy] because the certainty of the evidence is very low.”

    2. “All [studies] had a high risk of performance and detection bias."

    3. "It is important to note that the evidence in this review is from people diagnosed with 1994 criteria of the Centers for Disease Control and Prevention or the Oxford criteria. People diagnosed using other criteria may experience different effects."

    4. Almost all outcomes included in the review are given a ‘Certainty of the Evidence’ grade of low or very low.

    How this poor evidence led Cochrane to conclude that “exercise therapy probably has a positive effect on fatigue in adults with CFS” is unknown.

    Our added points:
    1. The review only looks at Randomised Control Trials (RCTs) and doesn't account for patient surveys that show the high rates of deterioration following exercise therapy for ME.

    2. While, there are several studies showing that exercise does harm people with ME, we do acknowledge there is not systematic evidence regarding the harms of exercise therapies. Therefore, we consider patient surveys indicating GET harms people with ME, and the growing literature around abnormal responses to exercise, the best available evidence.

    You can learn more about the effects of graded exercise therapy and the effects on people with ME here:
    1. #MEAction’s white paper: People with Myalgic Encephalomyelitis Show Deleterious Effects following GET and CBT
    https://www.meaction.net/…/Effects-of-GET-CBT-in-people-wit…

    2. A recent survey of over 2.200 people confirmed that graded exercise therapy (GET) is harming a large majority of people with ME receiving this treatment in the UK
    https://www.meaction.net/…/get-and-cbt-are-not-safe-for-me…/

    3. Reanalysis of the PACE trial shows GET and CBT are ineffective https://www.meaction.net/…/reanalysis-of-pace-trial-shows-…/
    Recap from David Tuller of the Cochrane review saga http://www.virology.ws/…/whats-up-with-cochranes-exercise-…/

    The Cochrane review can be found here: https://www.cochranelibrary.com/…/14651858.CD003200.p…/full…
     
    Simbindi, JaneL, inox and 22 others like this.
  14. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Messages:
    1,580
    Likes Received:
    9,603
  15. Adrian

    Adrian Administrator

    Messages:
    4,258
    Likes Received:
    20,876
    Location:
    UK
    From the latest review their assessment of selective reporting in PACE

    So they are still being very kind to PACE in terms of selective reporting where we know that protocol changes had a huge effect (after a court ordered them to release data). Also the TSC minutes were ordered to be released by the ICO and in them it is not clear who or when the stats plan was signed off and certainly not clear this was a new protocol which is how they treated it.
     
    JaneL, WillowJ, inox and 22 others like this.
  16. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

    Messages:
    140
    Likes Received:
    1,581
    It's really impressive how Cochrane manage to dance around the actual problems of their review to avoid damaging their entire brand. The problem with the studies isn't that there exists some sort of special ME/CFS group of patients that the studies in question might not apply to. The problem is that despite using the widest possible inclusion criteria, the studies weren't even able to show actual improvement for the patients in the studies receiving CBT / GET compared with the control groups. Of course if Cochrane were to make this admission, it would render countless other reviews from Cochrane, which also rely entirely on unblinded studies with subjective outcome measures obsolete. Which would ruin their entire smug brand. So we end up with this useless concession instead.

    Is what people should be thinking whenever they hear about this bogus organisation from now on. Can't say I'm surprised, but also won't pretend like I'm not disgusted.
     
    Last edited: Oct 2, 2019
  17. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    3,311
    Likes Received:
    27,289
    Where did you see that? When I ctrl+f it doesn't come up.
     
    DokaGirl and alktipping like this.
  18. Hutan

    Hutan Moderator Staff Member

    Messages:
    6,692
    Likes Received:
    30,345
    So maybe the most effective thing to do to ensure that this review goes into the dustbin of history is to get a Cochrane review done on studies of exercise therapy that selected people with ME/CFS (ie with PEM)? Is anyone working on that? I think there was talk about it.
     
    JaneL, JohnTheJack, Annamaria and 9 others like this.
  19. NelliePledge

    NelliePledge Senior Member (Voting Rights)

    Messages:
    4,298
    Likes Received:
    28,418
    Location:
    UK West Midlands
    And unless i missed it the statement was silent on taking the topic out of the mental/behaviour group
     
    JaneL, inox, Annamaria and 14 others like this.
  20. feeb

    feeb Senior Member (Voting Rights)

    Messages:
    148
    Likes Received:
    1,339
    Location:
    London, UK
    Maybe Larun and co. wouldn't let them. Why shouldn't another tail have a good wag of this particular dog?
     

Share This Page