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

I have realized that the new NICE/Cochrane collaboration is a two-way thing. So NICE can supply data to Cochrane to inform its reviews as well as Cochrane supplying NICE to inform its guidelines.


So I will suggest NICE share their review data with Cochrane to inform the new Cochrane Review - as long as that doesn't mean re-doing the GRADE analyses. Perfect for the "international" audience who don't take any notice of NICE.

 

No. They say their products are "trusted", but not that they are "trustworthy". Clever!

 

Politics and medicine have become like QVC*, you have to watch for what is not being said.

*they all may mean well.

 

They are very careful. Systematic reviews are categorically NOT advice. In the same way journal articles reporting a trial or other type of investigation on the effectiveness of a treatment are not advice. They are an analysis/synthesis of "the best available evidence" however bad that evidence is. They do not make much of a song and dance if there is no evidence, or if the evidence is full of holes (eg. no data on harms), or if it's difficult to find and badly reported. They fudge it if the evidence is poor - using pseudo-scientific quality assessment systems like "Risk of Bias" and GRADE. Every review concludes "more better quality research is needed", but Cochrane does very little to systematically or actively promote better research in the future, or punish people who have carried out poor research in the past. This makes their "products" at best unconstructive, and at worst misleading and dangerous. It's not badged as healthcare advice, so they get away with it.

 

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@Adam pwme
I've heard back from Cochrane on whether/when they will be providing an update on the evidence review. They do plan on doing that but the specific date is to be confirmed still.

 

Thanks for getting back to me. I don't suppose they gave a reason?

 

The review is quoted in this article as "Research suggests exercise may have a positive effect on fatigue in people with CFS...."
https://www.theguardian.com/lifeand...move-exercising-with-chronic-fatigue-syndrome

ETA: Article discussed here, Guardian (Australia edition): "How to move: exercising with chronic fatigue syndrome"

 

The review is cited in the RACGPs official guidance for treatment of ME/CFS:

Graded exercise therapy: chronic fatigue syndrome

Quite frankly, this review should have been taken down years ago. It is shameful. The delays since are causing harm to thousands of vulnerable people.

I have mentioned it in my submission to Australia's Royal Commission into the abuse of people with disabilities.

 

I will write to Cochrane again - copying in Hilda Bastian. Paul Glaziou, Hilda's PhD supervisor, and advisor on the Exercise review, I think has something to do with Handi. Will check that out. It's a clear conflict of interest even if Hilda says she has not spoken to Paul about the review.

 

Yes, Glasziou is a founder/committee member of Handi https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6355298/

 

See also the forum thread on the HANDI article that recommends GET for 'CFS' here.

(Edited for clarity.)

 

Every day that Exercise Review remains in the Cochrane Library it is harming ME sufferers.

Now that NICE no longer recommend exercise the Cochrane Review is the prime source for anyone wanting for their own reasons (commercial, ideological, justifying more research funding for exercise studies on ME and LC, maintaining professional status etc) to promote exercise as treatment for ME.

Now even journalists are referring to the Cochrane exercise review to justify their holding onto the false idea that ME sufferers need to exercise -
“Exercise can help people do more.” from "How to move: exercising with chronic fatigue syndrome" Australian Guardian 9/3/2022.

Four YEARS of procrastination. How does Cochrane, even in their wildest fantasies, think ME sufferers believe there are honest, sincere or justified reasons for the inexcusable delay in removing the review.

.

 

Has a UK version of Handi been produced? @Caroline Struthers

 

I sincerely hope not!

 

Assuming you mean reason for not giving a date, no they did not. As I said above, I don't speak for Cochrane but I would hope it would be soon. I'll continue to follow up.

 

I only asked because of this mention in the linked article:

"In an exciting new development, the Royal College of General Practitioners (RCGP) is partnering with the RACGP to provide access to HANDI for UK GPs. This is a free resource so why not take a look?1 In addition, the RCGP will be contributing ideas for treatments to be included, helping with the review process, and linking RCGP resources to HANDI and creating UK-focused versions of HANDI advice."

Post copied to The HANDI Working Group

 

Like @Medfeb, I've also just had a reply:

"...apologies for the lack of information on the exercise therapy for ME/CFS. We are planning to send an update about the status of the review and plans for the next steps, but the timing of the communication has yet to be confirmed. We will ensure it is shared with the ExerciseForMe-CFSUpdates subscribers."

 

Thanks.