Discussion in '2021 Cochrane Exercise Therapy Review' started by Lucibee, Feb 13, 2020.
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
I wonder if Hilda has got board of the effort so nothing has happened until she gets interested again.
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.
A number of posts have been moved to:
Why do BPS proponents keep ignoring the evidence against their ideas?
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.
We have set up a separate thread for people to express their sympathy for Hilda and her family regarding this very sad news:
In Memory thread: Condolences to Hilda Bastian on the loss of her son
Separate names with a comma.