On Twitter and by email to the Cochrane Independent Advisory Group email address I have suggested an alternative to Cochrane’s plan to keep the same review question (Exercise for ME/CFS) without consultation with patients. I have edited this post, as there has now been an announcement of a new Action for ME/James Lind Alliance Priority Setting Partnership. These partnerships are important in prioritizing research, and thereby the systematic reviews which underpin new primary research. I don’t see the sense in starting again with a review question based on an assumption about a disease of unknown etiology, which has been classified as a where exercise (and CBT) are appropriate choice for the treatment of ME/CFS. about the of the gives credence to the assumption that the factors which perpetuate ME can be treated by exercising (and CBT) might help is
Dear Hilda…
…. As I’ve said before, I don’t think starting again with the same “Exercise for CFS” review question is a good idea. It may be a welcome admission from Cochrane that it got it wrong the first time, but that now includes the review question. Things have moved on, and Cochrane is now flogging a dead horse, and ignoring the ongoing harm to people with ME whilst a new review is in preparation. Also, why ignore the 2008 CBT review on the library with the author’s conclusion “CBT is effective in reducing the symptoms of fatigue at post-treatment compared with usual care”. If you’re going to update the exercise review, it doesn’t make sense to ignore the CBT review which has all the same problems with it and is even more out of date.
It would be more useful to produce an overview of all trials on treatments for ME – GET, CBT, Lightning Process plus therapies outside the BPS domain eg. Ampligen, Chinese medicine (using studies from the recently withdrawn review) etc.. The review could ask the more pressing question of “Why are most of the very few trials on treatments for ME so appalling?” It could focus on objective longer-term outcomes like health services-use, disability payment claims, work/study/society involvement status, and short term objective outcomes physical function etc. plus maybe quality of life amongst the self-reported outcomes. A review like this could shine a much needed spotlight on the fact that most of the studies on psychological/behavioural/woo type interventions for ME ignore or downplay objective outcomes, use methods such as focusing on subjective outcomes to exaggerate the benefits of these interventions, and under-report harms and reasons for drop outs. The overall conclusion about the poor quality of research on behavioural and psychological therapies would be a useful take-away which could be applied more generally to improve the quality of primary studies of psychological and behavioural interventions. This would allow Cochrane to partly deliver on its stated aim of advocating for better primary research, the studies on which Cochrane reviews are built. Primary research is generally poor, especially in trials of non-drug interventions, which seem to be held to an even lower standard than drug trials, which have their own issues. Therefore, Cochrane reviews rarely say anything other than more and better research is needed. If you’re lucky, reviewers indicate what a good primary study should look like. But that is quite rare. This failure of Cochrane to advocate effectively was acknowledged by Mark Wilson himself. I will have to dig out the report where this admission is made. It was probably made in a considerably more subtle way that I remember. But it was made nonetheless.
I wrote a proposal to David Tovey in 2018 which outlined how Cochrane could pursue this idea of advocating for better primary research in partnership with EQUATOR. As further discussions in September 2018 were overtaken by other events, I posted it on my blog. https://healthycontrolblog.wordpres…help-improve-the-quality-of-primary-research/
With best wishes
Caroline