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

How completely, predictably, and despairingly unsurprising….

 

I'd say that the recent events with NICE has given me zero confidence the same won't happen again here. Cochrane already did a similar thing, it's basically expected they would do it again, although that's probably entirely tied together with how NICE turns out. NICE is a government institution with a legal charter, Cochrane has no such thing and neither organization have followed their own rules with us. NICE can do just cancel its rules and process, which Cochrane has zero obligation or incentive to respect and have not done once yet.

It's sad but honestly I expect the same here. If NICE can do this and Cochrane already did, the odds that it won't end up the same are basically nil. We are just hated that much, at this point I'm not even sure lepers were hated as much at their worse, it's absurd to see the depth of contempt. You'd think we killed every last one of their puppies, or something.

We need an entirely new model of health care and Cochrane is basically the gold standard of medical status quo, and the status quo is working against us. I'm seeing absolutely no learning happening anywhere related to Long Covid, it's the same junk all over again.

 

Contrast Cochrane's behaviour when it comes to the ME/CFS Exercise Review with this issue:

This article shows that Cochrane can do the right thing if they're willing (as is also the case with the journalist who wrote the article, Ben Goldacre).

Quite frankly, something stinks here.

Cochrane's evasions, duplicity and determination not to do the right thing by people with ME/CFS is nothing short of disgraceful.

 

Or should I say, there has been a "pause" in activity whilst we wait, in limbo, for notification of the next report?

 

My guess is that Cochrane has decided to find excuses to delay until they know the outcome of the NICE guidelines, then align themselves with them.

PS: and I think the reasoning used is that they want to avoid a situation where they contradict an authority like NICE because that would lead to more bad PR and conflict.

 

I hope aligning themselves with NICE means finally withdrawing the current review which still says there is moderate quality evidence that exercise is helpful for CFS.

 

Don't count your chickens...

 

Too late. There are 37

 

wouldn't it be so lovely if we could just take up a hobby -like exercise - when life with ME gets either too boring, or too difficult, or both at the same time?

 

This just seems to be an exercise in frustration for us, frankly. We aren’t kept in touch with what’s happening, there’s no transparency about who gets to make the decisions about this and why they were chosen. Unfortunately, it looks more and more like this review is going to be the whitewash we all suspected it would turn out to be and once more, powerful vested interests will win over the well-being of the people whose lives are being devastated as a result of this ludicrous failure of people who owe us better.

 

I don't keep up with this stuff so I may be inaccurate here.

The whole thing seems bonkers* we can see NICE aligning themselves with Cochrane but the NICE review has just shown all of the ME/CFS studies were "low or very low quality" and Cochrane presumably marked these as "medium" - how is anyone expected to have confidence in this system? We know all of the previous [Cochrane] reviews re ME/CFS were crap but lets trust them to do it all again.

*https://www.s4me.info/threads/nice-...-guideline-recommendations.22209/#post-370570

 

Just saw this on Twitter. Heartbreaking personal news from Hilda Bastian who has lost her son. I fully understand why everything else has been on hold.

 

How will the new NICE guideline affect Cochrane’s review?

 

Presumably there are no necessary or formal constraints on NICE and Cochrane disagreeing with each other over GET, but hopefully it will put informal pressure Cochrane to speed up their reconsideration of their own contentious review of exercise in ME/CFS when the NICE evidence review came to very different conclusions. The current disparity will be embarrassing for Cochrane given there are moves for Cochrane to work directly with NICE in producing evidence reviews for future NICE guidelines.

 

I think it will have a very big impact on the process of reaching an assessment. The problems with the Larun review were well known but the guideline makes them official in a way that means that to revert to the Larun conclusion would require very clear justification.

It will be an open test of the integrity of the group Bastian has chosen.

Cochrane may retreat using the arguments raised by Busse and Guyatt but if NICE and Cochrane are now supposed to be fused it will all be rather difficult.

 

Am planning to write to Cochrane Editor in Chief in the next few days to ask them to withdraw the two reviews again in light of many stakeholder comments expressing "confusion" that NICE has not used the Cochrane reviews, and the response from NICE. Notably, there is a quote from the RC Psychiatrists saying it is unhelpful *to clinicians* [my emphasis] to have two opposing findings out there. No concern for the effect of this on patients of course, but hey.

 

I really don't keep up with Cochrane/Grade ---

Basically, as @CRG has set out, NICE is responsible for preparing the guidelines --- if something inappropriate is incorporated into a guideline (dodgy assessments by Cochrane or whatever) then --- NICE is responsible

So basically NICE can use Cochrane ---- Cochrane can continue to produce crap evaluations --- the problem (for NICE) arises when NICE incorporates that "inappropriateness" into a guideline. The problem for us is challenging a dodgy NICE guideline e.g. the 2007 guideline - the high bar to prove the guideline is unreasonable. By the way I'm pleased/reassured by the new guideline.

Theoretically NICE should be carrying out a sort of continuous improvement process. So NICE should be highlighting (to Cochrane*) the fact that it has found Cochrane reviews to be inaccurate and seeking some reassurances that this will be addressed. Perhaps NICE has already raised the issue - we don't know. Ultimately if NICE is paying out public money for a crap product (Cochrane*) then NICE should be concerned that the auditor/public accounts Committee/Minister at DHSC ---- may ring the door bell and ask for an explanation -. Perhaps some charities/folks should challenge the use of Cochrane; some have suggested that we shouldn't highlight NICEs independent evaluation of these studies since well the answer was the one we wanted.

As for Cochrane --- OK the person you bought something off should respond to issues --- but I wouldn't get my hopes up. Also, @Jonathan Edwards has questioned whether you really could deliver a GRADE type evaluation --- nothing that has come out so far suggests you can.

*https://www.nice.org.uk/news/articl...t-to-deliver-living-guideline-recommendations