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

I cannot thank enough everyone who has been commenting on this thread to describe the consequences of the twisted science behind GET and CBT, either on their lives as patients or carers or generally on the medical and scientific fields. And for calling on doing better, much better, than harming ME sufferers with inappropriate treatments.

While I have only recently become ill with ME, your support and advocacy effort are invaluable for the generations of ME patients to come -- first and foremost those who may come down with ME due to the current pandemic --. Thank you for helping us.

Agreed. Although the Infectious Diseases group is not responsible for the review on exercise therapy in CFS, reaching out to Prof Garner is worthwhile. Is that possible @Hilda Bastian? I dream that he would be able to sit on the review committee, or otherwise that he would provide the committee with an expert commentary/input given his position at Cochrane.

 

Yes - thanks for drawing my attention to it, though. We've been messaging/emailing about all this. Yes, I expect he will be contributing his views, and definitely keeping up with emerging data and research on post-Covid effects.

 

Awesome! Just awesome!

 

So very, very well said.

 

That is very encouraging to hear. @Hilda Bastian's earlier post gives me some hope you may be right.

 

Precisely.

 

Absolutely.

 

The problem is that if someone - maybe someone who has a recent diagnosis of ME - types "chronic fatigue syndrome" or "myalgic encephalomyelitis" into the Cochrane Library search box, the results don't present a coherent picture. It would be confusing for those not privy to what's been going on to see a note on the exercise review saying it's being updated, but no note on the CBT review to indicate there's a problem with it. Many will read the plain language summaries and/or not notice the note on the abstract anyway. This is an observation and a concern, not a question requiring a response.

 

Yes, agree.

The next report will include the first wave of members. After the second wave, there will be one final slot that the members will choose how to fill. We don't expect rapid turnaround on nominations when we invite a group, once the group has accepted a position.

 

Yes, agree. It's a weird "in-between" time for Cochrane reviews in general and for the CFS reviews in particular. There's going to be a new system that enables this easily, but it's not functional yet. And the transfer of editorial responsibility isn't complete. Should be simple, but it's not. It will happen.

 

May be off topic, but I have been thinking about all this (ME patients often have to lie there unable to do anything but think, one of our few advantages, really)

Basically, we have the professional medical researchers with their published, peer reviewed studies who claim that CBT and GET do not harm patients. On the other side, you have patients who claim that these treatments can lead to severe harms, including becoming wheelchair or bed bound for life and this can happen in both adults and children. They also claim that even people who do not experience such drastic harm can become much sicker for an extended period of time.

This debate is presented to other scientists and the public as activist patients harassing researchers who are working for the benefit of patients.

When you lay it out like that it is glaringly obvious that the patient claims MUST be investigated. In no other branch of medicine do the patients have to prove a treatment is harmful. The onus is on the doctor to prove it is safe to use.

Why is this basic human right denied ME patients?

Now this is without going into whether the trials are methodologically sound or if the researchers are well intentioned. The antivaxxers claim that vaccines cause harm and a fortune has been spent proving them wrong. Why not research our claims instead of making it a war? Even if the surveys are self selected, how many children need to become bedridden and tube fed before a product can be said to be harmful or that we need to find a way to identify those who will be harmed before using the treatment as universal?

These are basic points for medicine and are not confined to the debate about ME.

 

I would also add monitoring checks to show that the patient isn't just replacing their normal daily activity with the exercise therapy.

 

Precisely. Cochrane is the only organisation that does (occasionally) publish empty reviews. But currently they seem to view these as something to be avoided - an editorial embarrassment. I have argued that empty reviews or reviews where studies are mostly poor quality (ie. most reviews) should be welcomed, as long as the review question and outcomes have been prioritised and specified by patients, not driven by researchers or what's reported in the literature. Empty reviews could be used systematically and constructively to advocate for and prescribe better primary research - campaign documents and trial/study protocols rolled into one. These documents could be available and/or pushed to funders who could then focus their call for proposals according to the knowledge gaps identified by the reviews. That said, a trial on exercise for ME would now probably be considered unethical. Maybe a trial on withdrawal of GET would be better!

 

This is a great example of the problems with adverse effects monitoring in those experiments. The timeline for observation in this disease is far longer than usual and cannot rely on single points in time, the natural fluctuation of the illness itself demands it.

The people running those experiments have no useful understanding of the illness, its course and progression. They commit basic mistakes that would normally invalidate their work in any non-discriminated disease but since their misunderstanding has dominated for years, the rest of medicine is equally confused and unable to properly assess how to evaluate the illness.

I don't understand how the PACE long-term follow-up that recognized that not only there were no benefits but actually an increase in disability benefits, with the authors plainly saying "this is not curative" despite having gone on a PR tour for years touting the opposite, did not cancel the very weak questionnaire-based "benefits" initially presented.

 

And there is the non-trivial bias that was reported somewhere by a PACE participant (maybe more than one), that because they wanted to show how "well" they were doing, they basically exchanged some of their normal activity in order to do better in the trial activities.
So the trial's "encouragements" to demonstrate best improvement, was actually motivating some to bias these supposedly objective results anyway, by transferring some of their non-trial activity across into the trial activity. Which in itself is clear example of how open label trials can foster subtle but significant bias, especially when the 'treatment' explicitly provokes bias-inducing behaviour.

ETA: Just realised @John Mac beat me to it, but much more succinctly.