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

The admission that some Cochrane members are reluctant to scientific criticism being shared openly, for everyone to review, is seriously concerning for the organisation's credibility as a whole. They should be keen on promoting post-publication peer review (à la PubPeer), not opposing it.

While I do not know the grounds on which you favored potential picks, relying on hearsay is problematic, especially when there is (recent) evidence that the person being considered conducted poor quality work on the matter at hand. The studies involving Dr Newton that I mentioned exhibit some of the same methodological shortcomings that prompted the review to be updated in the first place. Certainly this should be grounds for choosing someone else?

I would add that, depending on whose opinions might have been collected and had the methodological issues not been known, hearsay alone could have led to some proponents of exercise therapy for ME/CFS being selected as reviewers.

 

When you analyse the NICE review, will you critically appraise its scope and methods (such as use of GRADE) or check the data and reproduce the analyses - or both?

 

Were researchers who work on the quality (methodology, reproducibility or replication) of trials of exercise and physical activity in chronic illnesses asked to participate, either as reviewers or to sit on the IAG?

Someone who is familiar with ME/CFS and the evidence base for exercise therapy in CFS is Rosie Twomey, and while others in the field may not (immediately) be, they have likely seen the methodological issues that have been raised with the review elsewhere and understand them.

 

Again, I don't want to hassle you @Hilda Bastian but I am wondering if it's the case that you were unaware of the politics around patient involvement when it comes to ME. We are not your typical patient group thanks to the lobbying, smear campaigns and gaslighting that has gone on for so long.

It is quite usual for the go to person when discussing ME in the UK to be either a member of the establishment, or someone with close ties to the establishment. Generally the BPS pro exercise point of view is given dominance.

It is also true that the establishment by way of the BPS school have tried to pressure medical experts who also have ME to remain silent. Even going to the extent of making unfounded complaints and accusations against them to their employers. One example is Dr Keith Geraghty.

When trying to diminish or distract from valid criticisms made by the likes of Geraghty the establishment have claimed that patients with ME should be excluded from positions of potential influence because if a conflict of interest.

Patients with ME, be they expert patients, or experienced researchers who happen to have ME do not have a conflict of interest. They have an interest in rigorous, high quality research that yields accurate results with honest and open reporting.

Within the ME community we have many experts. In this forum alone we have doctors, nurses, university lecturers, teachers, statisticians, psychologists, IT & data specialists etc. There is a wealth of expertise well versed in the issues unique to this community.

Hence our suspicion when someone with close ties to the establishment has been chosen, with little to no input from us, to represent us.

 

Patient experts is probably the preferable term, as it also implies that not every patient participation is positive, the participants need to have minimal fluency on the topic, this is not something to learn on the fly, as one comment above explained it can actually be worse than no participation since it's too much information to absorb for a pwME.

Activist being pejorative is a specific thing in chronic illness, I don't think there's working around the fact that it's been used in bad faith to dismiss legitimate complaints. It's a positive term that's been corrupted in the context. But so have almost every relevant term, including most of the technical terms, including fatigue, so it's a special situation to have to work around common language because that language has been distorted specific to the context, as we have been reminded lately when there was a vague mention at a recent CDC/NIH conference call.

It's amazing how much damage can be done against a patient population by spreading vague mentions of unspecified misbehavior through the media. The consequence has been that anything we do is bad on principle, because we are bad militant activists, even if people like Richard Horton, who badmouths us as bad activists, proudly wears the activist mantle. Even when we literally do nothing but post scientific papers in a discussion. It's just weird like that.

 

Or a co-founder boasting about the superior powers of his mind for overcoming... 95%+ odds... one whose specialty is clinical evidence yet believes in the magical powers of his willpower and is willing to go on national television in multiple countries to spread the good news about how anyone can use exercise and positive thinking to beat.... 95% odds. I'm not even sure making the same claims about healing crystals would be any more humiliating and disqualifying.

Oddly enough, about the only time I saw significant public criticism of Cochrane was following the announcement of the retraction-that-never-happened and people like Clare Gerada were using their very prominent platforms to trash Cochrane and basically threaten their survival if it happens. That clearly rattled a few cages.

 

I would say Todd Davenport fits that description.

 

I think @Sly Saint nailed this process in an earlier post

"a report about setting up a committee to debate how to write a report to answer an enquiry about a previous report on a review of an update of a review that was out of date but needed updating but was ok to leave in place while they reviewed how to set up a committee to review the evidence, stir twice and repeat."

 

I don't believe PWME and their advocates bear joint responsibility for the unpopularity of ME topics, or for the stigma that flows from all being judged by the behavior of a minority. I don't believe criticizing, or being persistent in criticizing, is a problem: not for me, and not for Cochrane either.

There's such a huge spectrum of choices about actions - many have been raised here, and there are many more. I believe each can have consequences - both ones that are desired, and ones that are not. Even when people believe they are doing the right thing, and with the best of intentions and best of skills, they can cause harm. That's so for communication and advocacy efforts as it is for other interventions.

Yep - and the language of activism, advocacy, and taking action is widespread globally in ME/CFS communities, including as self- or group description - though obviously not universal. I haven't been talking about S4ME specifically, but yes, totally agree of course that taking action often isn't the primary purpose of a group - and there are some that are purely support and/or fundraising, and never try to mobilize opinions or responses and spur actions on any issue whatsoever.

 

I think a range of abilities are needed for specific roles - and there are abilities in common across multiple roles, but some that are specific. For example, you don't need particular values and beliefs to provide a really valuable peer review. What you find out about people in interviews, or from people they've worked with, or asking what their track record is with community groups and so on is irrelevant to peer review if they have the technical knowledge and analytical and written skills you require: but it's highly relevant to people in an author team.

 

I did not say that some Cochrane members are reluctant to scientific criticism being shared openly for every to review. I just pointed out that if I wanted to make everybody at Cochrane happy, I wouldn't start off with a long list of unvetted criticisms without responses to them, from the starting point of looking only for critiques not supporters' articles or favorable commentaries about how great it is. I have faced no headwind from Cochrane for doing this, much less opposition.

Edit: PS - Cochrane does promote post-publication peer review, and is better than most journals at publishing it. (Doesn't mean that every editor and author is good at responding to it, though. That will be something the IAG will make recommendations about down the line.)

 

Not again! Please let's not promote this "behaviour of a minority" meme unless we can at least define it, in terms of what actions this appalling group committed, even if not in terms of who they are.

You see, this idea of making a split between a "dangerous minority" versus "nice grateful patients" was created by those defending exercise and psychotherapeutic interventions for CFS. They wanted to create the impression that only a small and generally unhinged minority were critical of these treatments, and that the majority of "nice" CFS patients were eager for these treatments. The "minority" were somehow ruining everyone else's chances of getting them. It worked very effectively, until the some folks in the UK created a petition to remove GET from CFS treatment recommendation, which was signed by more than 10,000 people in the UK. Which is a pretty big "minority".

The "minority" group was accused of many things, but most were hearsay, and were reported by those who created the "dangerous minority" meme in the first place. I am yet to hear any genuine reports of unacceptable behaviours from this group - other than perhaps some reports that a patient was angry or rude in some context.

If there's evidence for an abusive, nasty, dangerous minority, then I'll accept that, but can we please stop assuming that until we know.

Patients with ME are also constantly talked down to about how we "should" and "shouldn't" campaign, not only is this a way to shift the responsibility back to the patients for the lack of change ("we would have listened if you'd been nicer about it! but we won't because you're mean!"),
but it super patronising. First of all, we are a bunch of patients, not a lobby group. Every patient has the right to respond in whatever way they like to the situation they find themselves in (as long as its legal). Second, we are not a coherent organised group, so we cannot police a few patients who lose their temper on twitter.

Imagine if white people were instructing BLM activists on how to be "nice' in their advocacy? Implying that their lack of niceness is the reason why the abuses continue? How appropriate would that be? Did we see AIDS campaigners in the 80s being told that the reason they're not getting treatment research is because they are not nice enough about their campaigning (they really weren't nice, and that turned out to be a pretty good strategy for them in the end)?

Please, no more "dangerous minority" talk (or even any "angry minority" talk) until there's data. Everyone - both patents and healthies - can share specific ideas as to what might work best in advocacy. But these must be made in good faith, not as a technique for blaming us for the situation.

 

Hilda, you have now been asked a version of this question at least 3 times and haven’t answered. Please can you tell us who these people are and what they have done? If you are not willing or are unable to tell us, please can you explain why?

I don’t speak for the forum but I’m fairly sure that if there are people claiming to speak on behalf of people with ME who are behaving inappropriately or unethically we would all like to know who they are and what they are doing so that we can all condemn their actions and dissociate ourselves from them. However, repeatedly referring to them without saying who they are or what they are doing denies us this opportunity and perpetuates prejudices. That in itself is an unethical behaviour in my view.

I am grateful to you taking the time to answer questions on here, and very much hope that you will not continue to dodge this one.

[Edit: crossed with @Woolie ’s post above]