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

Henceforth to be be known as Cochandbullrane.

 

any movement in getting ME/CFS taken out of the Cochrane Common Mental Disorders Group?

 

Well yes in that the new Exercise review if it ever happens would be not in that group. But no in that the current Exercise and CBT reviews they refuse to withdraw are still in that group. It's so completely illogical, I cannot fathom it.

 

Pretty much literally: don't ask us about the stuff we publish, we just publish it, we don't actually vet any of it.

Cochrane seems to mostly be a platform for self-promotion, frankly. How it is still considered the gold standard of clinical evidence says a lot about why clinical outcomes have not improved in decades.

 

Do we know what group it would be in?

 

Nope. they have got a special central editorial group working on it, so it is now outside the review group system. I don't know if this has ever happened to any other reviews....I doubt it. the review group system is totally stupid anyway.

 

From the POV Cochrane seems to take toward ME and other poorly understood illnesses I'd suggest to them they start a fringe science division. It would seem appropriate to the direction they're taking.

 

I wrote to Hilda today (cochrane.iag@gmail.com) to get it all my correspondence with Cochrane about withdrawing the reviews on record

3 Feb 2021

Dear Hilda (cc Rachel Marshall, Karla Soares-Weiser)

I hope you are doing OK.

Please could you add the correspondence below to the archive about the update of the Exercise review?

On 19 November, after the publication on 10 November of the draft NICE guidelines for ME/CFS, I notified Karla of “a serious error” in two Cochrane reviews, the Exercise for CFS review, and the CBT for CFS review and asked for them to be withdrawn. According to the policy on withdrawal a serious error occurs if

“Following the conclusions of the review could result in harm to patients…”.

As you know, NICE has now removed the recommendation for Exercise and CBT as treatments for ME/CFS because of extremely low quality evidence of benefit and new evidence of harm. Having two Cochrane reviews which both indicate there may be benefit in these treatments is continuing to put patients in harm’s way. In the case of the Exercise review, Cochrane still rates the quality of evidence on fatigue as “moderate”, in contradiction to the NICE rating. In the case of CBT, the review is nearly 13 years out of date and does not include any studies after 2007.

On 1 February I received a short response from Rachel Marshall which didn’t make sense or address the key issue of patient harm. I responded the same day to ask for clarification which I haven’t yet received, but I realise it’s early days.

With best wishes

Caroline

 

Thanks again @Caroline Struthers

 

NICE looked at outcomes from various non pharmacological trials, with 89% rated very low quality and the rest rate low quality. Did anyone manage to work out which outcomes related to which trials?

@Valerie Eliot Smith are you following this thread? Do you think there could be a legal case against Cochrane?

 

I'd like to see a legal challenge.

Although maybe we could learn from the best and follow their playbook. First spend time doing lunch with all the right people and whisper our demands for the system to be altered in a way that will effectively give us a certain win.

 

Likely after the fact but Cochrane is an independent non-profit, it is not regulated and can basically publish what they want as they see fit. Their influence comes from the trust medical professionals and organizations put in them, they have no official power. Clearly misplaced trust but whatever, the organizations make their own choices and are not bound by any obligation to do any better.

Their whole reason to exist is because they claim to independently validate research. Here we see them admitting they don't even do that and find no obligation to even pretend, even when found out to have blatantly neglected their one and only mission. Nothing illegal or forbidden, it's medical institutions who give them power by not caring either about the fact that Cochrane is evidently unfit for purpose and now only exists as a medium for self-promotion.

But that's like people voting for terrible politicians who actively make their life worse. You can blame the politicians, but it takes two to promote a big lie: one to make it and one to echo it.

I don't remember if Wakefield went to prison, I think not, but Horton has never fielded any blame even though he was far more responsible than Wakefield. Yet he is still there in his position doing the same thing again. If professionals don't hold failure to account, nothing we can do, sadly, we have zero influence on what health care decides to do with us. At least for now.

 

I will try and contact @Valerie Eliot Smith direct about this as the Charity Commission advised either re-engaging with Cochrane (tried that) or seeking legal advice as a next step. What about Monbiot?

 

The fact that they are a not-for-profit would seem to be suspect. I guess it depends on the wording of such things and how Cochrane has interpreted that.