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

Another way to think about this is that essentially the money that was meant to help patients has been diverted into subsidies for researchers and therapists with treatments that haven't been shown to be better than a placebo. It's a form of exploitation and we must finally break free of this and ensure that the money goes towards sensible research and interventions that actually work.

 

Apologies for again just popping in for one reply:

Thanks.

I meant the people assessing the evidence. Maybe even better if the complete authors team could participate in the discussion. Anyhow, my suggestion was prompted by the wording of what the IAG's goals are:

If I understand properly, that means the IAG won't have a say in the applied methods to assess evidence, e.g. won't be able to discuss prerequesites/ corrections / amendments if the standard Cochrane processes to assess evidence are applied?

(Which probably would imply an essential criticism of much of Cochrane's work, not only the work directly related to ME/CFS).

That's a point I thought would be worthwhile to discuss with people chosen by S4ME before starting the phase of writing the protocol and assessing the evidence.

(But I'm afraid would need some time for S4ME to prepare.)

 

The blog I posted is simply a repeat of the submission I made. I've only just found it on the list - I'm at no. 42.

 

Thank you! And yes, I would despair in that situation, too. I am confident we have enough expertise to do an excellent job, plus the commitment to do it, too, and the commitment of enough people to point out mistakes and suggest improvements as we go along.

 

Thanks!

 

Thanks - I added the link just now.

 

Oh for _ sake!...



<insert scottish accent> "we're doomed!"

apols to those who dont get the doomed quote, am trying to lighten my own mood about all this

 

George Faulkner definitely fits the description of people who have been fighting for a proper review: he's been doing so intensively with Cochrane since 2013 (see his bio for the IAG): for context, that's a couple of years before Tom Kindlon and then Robert Courtney submitted their comments on the review to Cochrane. I'm not intending to dust off people's disappointment here, but at the same time, I'd like to make sure that people's disappointment with my decisions doesn't translate into dismissing the contributions of people who have worked very hard behind the scenes for years.

I agree Lily Chu is wonderful! But I don't agree that people from the US don't understand the perspective on the issues and science expressed in this Forum - for example, see the MEpedia entry about Mary Dimmock and Thirty Years of Disdain, which she co-authored with Matthew Lazell-Faiman (her severely ill son).

I also wouldn't underestimate how useful the extensive articulation of the issues and concerns is: all that effort to explain to explain concerns and points of view has created a body of writing that can inform others very well. That's why the starting point has been deeply engaging with that material, so that the issues and concerns people have put so much time into articulating are listened to. And consulting about how we distilled will provide the opportunity for people to point out what we miss, or misunderstand.

But they did nominate S4ME for participation in the IAG, and they were notified the group was under consideration: I answered all the questions they asked, and I accepted their invitation for me to join this Forum as a guest.

I'll expand on what the report explains on this point: for those 3 positions, the member of the IAG is the group. Once a group accepted the invitation to join the IAG, they didn't nominate patient representatives for consideration: they were asked to name a representative with ME/CFS. It wasn't a case of providing nominations that I chose from: it was their choice, and the same would have applied to S4ME had the group been chosen. (In the case of ME/CFS Australia, because of illness, their representation is shared by two people, with a named proxy in case both cannot participate at some point because of illness.)

Thanks for stressing and articulating this important point. I think you can count on the people with severe illness on the advisory group to keep bringing that point home - and I'm sure it will be in the consultations too. And I am confident that Mary Dimmock will ensure that severe illness remains a clear priority for the author group.

 

In fairness, Kay's bio also makes it clear she is no longer employed by the Navy. I wouldn't have proposed her if I didn't have confidence in her knowledge, abilities with research, integrity, and skills in communication and persuasion.

Power is always limited, but the IAG has a lot of it. I am very committed to this group and have a huge amount of respect for them.

 

Public and individual notifications were all done within a few hours, on the same day.

 

Thanks! Not too late. As the report says, this is an ongoing process: we're listening.

 

Remember when you were criticizing the plans for the review to be authored by staff? That's where I came in: the composition of the review team is clearly very different.

On Cochrane's side, the new editorial group had to be negotiated. That took time. Then the respective roles and responsibilities of the different arms of this were negotiated - it's a completely new arrangement, and it was important to enter into this with enough clarity to enable everyone to concentrate on the critical tasks and avoid conflicts, duplication, and things being overlooked because someone assumed someone else would be doing it.

That process included negotiating the role of the IAG in the review: usually, there's just rounds with editors and peer reviewers. It included things like my proposal for a public discussion of the protocol post-peer review and before a final editorial round for publication.

The pandemic affected everything - even down to making recruitment harder. And the task of analyzing the history of critiques took longer than anticipated.

It's a different process.

Lf course I'm very familiar with the view that reviewers who know nothing about a topic are the ones best placed to review it, I don't share that view, and I've always opposed it. You complained about Cochrane's original plan to do just that, if you remember. Consider, too, the current opinions being expressed on this Forum about a review done by the CDC on that basis.

I don't believe anyone could come to this review with no opinion about exercise, even if they had never before heard of ME/CFS, and I think people's beliefs about exercise have been a key part of the problem with this issue from the beginning. And even when you start on a review process with no prior strong opinions, you develop opinions very quickly.

 

On this point - there are many Cochrane groups dealing with chronic health problems, but they focus on parts of the body - like the gut, or hepato-biliary system, or airways - or on particular conditions that are large parts of the health and care systems and medical research, like cancers. ME/CFS may one day fit more unquestionably into one are than another, but not yet. And I don't think it's puzzling. Pounding at a group of people constantly has negative consequences. It's a situation people typically prefer to avoid, and defend against. I'm very hopeful that we can chart a more fruitful course for the future.

 

No problem - she was in the Navy in 2019. Her bio makes it clear that's past tense, though.
Yes, I know you don't know her views or her capabilities, and I realize you're not going to take my word for it. I wouldn't expect anything different.

I don't believe every patient who ever depended on a health care service is compromised by the views of the people who ran it.