Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

I will be looking at the methods and evidence related only to the subject Cochrane is reviewing. I'm not going to check the numbers in their GRADE tables, for example, and I'm not going to try to reproduce their analyses of qualitative or other research. My focus is on the quality of the Cochrane review and supporting stakeholder engagement in the process.

 

Yes - and thanks for the suggestion.

 

I have actually been quite shocked at reading the victim-blaming here on this thread; non-sequiturs and comments regarding "actions" of a "minority" without an explanation of how this bears on the matter at hand. Just trying to shift the blame to pwME for their own mistreatment. Sad and disturbed to see this narrative repeated again, particularly from a group claiming scientific legitimacy.

I urge anyone who believes that ill patients are somehow "playing their part" in a dynamic that has resulted in abysmal care, harmful "exercise treatments", and further unnecessary suffering to rethink where they first heard this narrative about very ill patients, and about whose interests it has ultimately served. We are not "part of the problem". We have been harmed by a confluence of politics and bad science, among other factors.

 

I've replied previously that I will expand on the process in a methods report.

Kay Hallsworth did not seek this role. I found her via internet searching. No person proposed for the author team was endorsed by any organization: it's a team of authors, not a committee, and no one is a representative, although I appreciate that perceptions about this differ.

Edit: PS - Just realized I didn't explain what it means when I say I'll expand on the process in a methods report: I'll be gathering questions and suggestions, to inform the development of the report (with further questions and suggestions welcomed on a draft).

 

No, I'm not saying any of that. (Indeed I've said that I had invited one who declined on grounds of illness.) And as I've also said, I would not have proposed for authorship any person who I didn't think would do the job well. Thanks for the suggestions.

 

Thanks. I am reading the thread. If I don't answer a question that's been asked several times, it's not because I've overlooked it: it's because I'm either still thinking about how to answer it or I'm not going to answer it. I did not describe behavior as inappropriate or unethical: I talked about behavior having consequences, and about being effective. I don't think my elaborating on this here is going to be helpful. I'm sure there are people genuinely interested in what behavior I think crosses the line into being counterproductive - everybody has opinions about that, so of course I do. My views are probably very different to those of many people responding in this thread, and I'll be leaving it at that. I'll keep reading though.

 

I am not sure if you prefer not to read my posts @Hilda Bastian, or whether you just find them too close to home to respond, but sadly this looks to me more and more like the blind leading the blind.

What is needed is clear thinking. Clear thinking is easily recognised, as is muddled thinking based on fixed assumptions and vested interest. Discussions here show that remarkably well.

Looking at the recent Newton paper on obesity it is clear that it is muddled thinking - the reasons are given in the thread on it. I had always thought Julia Newton's approach was muddled. She was involved in a trial of rituximab in fatigue in primary biliary cirrhosis. She implied to me that there was no great need for another trial for ME because all fatigue is the same and if the drug worked in PBC it would show it worked on fatigue.

But we know that the PBC, and its fatigue, are mediated by antibodies. Rituximab removes antibodies. We have little evidence for fatigue in ME being mediated by antibodies. So there is no way to extrapolate from any effect of rituximab in PBC to ME. That is a simple clear argument that everyone reading this can understand but it seems that Newton did not understand.

It is now clear that Newton has a presumption that somehow exercise is likely to help ME by reducing obesity when it makes much more sense to think the obesity is a result of the inactivity of ME rather than the other way around.

Pretty much all the Cochrane people I have interacted with seem to think in a similarly muddled way - about exercise and about trials. You might say surely all these experts are not going to be muddled. But these are self-appointed experts with an agenda that from my perspective is not mainstream clear-thinking science but something much more to do with medical politics.

What is the purpose of this re-review? It seems just for Cochrane to be able to feel that it has ticked a box at present left not quite ticked. Yet Cochrane could have ticked the box long ago by following the advice of those consulted by David Tovey - which was to withdraw, presumably because people could see that there was no useable information on which to base an analysis.

Inviting muddled thinkers to re-review seems to me just to perpetuate the problem.

There is nothing difficult about this. People here have no difficulty identifying muddled thinking. Sadly, muddled thinking ais all too common if there are competing interests like research funding.

 

Well, in connection with the right and wrong patient "activist" behaviour: AIDS activists back then poured fake blood on people, they stormed schools with pamphlets that warned teenagers of the dangers, they put a giant condom on a senator's house, etc etc etc, the list is really long. When have we done anything like these seriously? I think we are actually very tame compared to them.

Now: they have a disease that is quite well manageable and they can live a close to normal life. To me that looks like a success.

Sorry but I don't see the kind of causality Hilda Bastian talks about. Unless it only applies to pwME. (I don't know what kind of wrong attitude a mysterious minorty of us has, but I doubt it is as out of line as the above examples.)

 

We need to understand what is going on internally at Cochrane. If it's a simple misunderstanding of ME (erroneously viewing it as a state of deconditioning) then it should be easy to fix if people are willing to listen.

 

Yes, I know you are only going to be looking at the exercise stuff. Are you going to check the GRADE ratings - ie. to check if you agree that the NICE reviewers' grading of low and very low quality is correct? Are the Cochrane author team going to be looking at the NICE review as well before they write the new protocol?

 

I read all the posts, but won't be replying to all of them.

If I was bothered by this, I wouldn't have accepted this role, or the invitation to be a guest here.

 

Trouble is, I cannot really make anything of these generalised cryptic responses.
This is a real life situation and although professional colleagues may see me as breaking 'protocol' it seems to me that for the benefit of the patients we need to call a spade a spade.

I cannot understand why anyone could not be bothered by Cochrane being dominated by muddled thinking - it doesn't really make sense. Did you mean 'If I was not bothered by this'?

 

The inadequacy and cherry-picking in attending to other major systematic reviews is one of the criticisms I made of the amended review in October 2019, so, yes.

 

I was replying to this: "I am not sure if you prefer not to read my posts @Hilda Bastian, or whether you just find them too close to home to respond".

 

Other than sufficient knowledge of the topic and methodological rigor, no particular set of values and beliefs are necessary to provide valuable peer review, but those held are biases that influence peer review. Dr Newton seems to adhere to the biopsychosocial model of ME/CFS and this is highly likely to influence her peer review.

In your previous post, you said that your choice of Dr Newton was made based on the positive feedback you have received, but you now say that this is irrelevant to peer review. Thus the choice should have fallen back onto assessing her "technical knowledge and analytical and written skills" alone, which should have included taking into account her published work on physical activity/exercise in ME/CFS. Had it been, given its poor methodological quality, it seems unlikely that Dr Newton would have been chosen.

Did this body of work not come to your attention or was it overlooked otherwise?

Cochrane may well publish post-publication peer reviews, but the review not being withdrawn after patients highlighted serious flaws, which has instead led to this drawn-out update process, the dead-end responses from Cochrane to @Caroline Struthers' repeated queries, the change of the retraction policy are all examples that it fails and is unwilling to act upon it.

To date, in the context of ME/CFS, comments on the "behavior of a minority" have come from proponents of exercise and CBT and their only purpose has been to stifle scientific criticism of their research -- and the harms of these treatments --. This has not been limited to the UK but has happened internationally (e.g. in Norway). While judicial scrutiny found these claims to be baseless, they have been amplified by public relations campaigns, and have been used to criticize the update of the Cochrane review.

Therefore, now that you have put it forward, clarification on your definition of this "behavior" and who is the "minority" is not just helpful, it is essential in keeping this update process fact-based. Unclear and unsubstantiated claims about patients have no place in a process that claims to be consumer-centric.

I believe that your involvement in the process is the closest commitment from Cochrane to openness/outreach that we will get. I am thankful for the work you have put in, but I am disappointed that once again, Cochrane, through your voice, chooses to ignore or dodge evasively specific (and reasonable) questions asked by patients whose lives have been, are and will continue to be impacted by the review. I hope you'll be able to answer these questions in time. The importance of transparency cannot be overstated, but so far, the process is opaquely being conducted behind-the-scenes.

 

Just to clarify, Julia Newton is a member of the author team, not a peer reviewer. In addition to her clinical and research roles, she is a medical advisor to Action For ME and ME Research UK.

What the report says about this:

Since Cochrane posted in March 2020 that we were considering authors and establishing the IAG, expressions of interest and suggestions about potential contributors have been coming in. We are very grateful to everyone for their interest and willingness to contribute. Everyone has been considered for each of the roles, and will be considered for the range of other activities currently planned for the review – for example, peer review and a discussion group of ME/CFS groups.