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

Bravo Trish! Duty, (of Candor) I suggest?

THE DUTY OF CANDOUR is a statutory (legal) duty to be open and honest with patients (or 'service users'), or their families, when something goes wrong that appears to have caused or could lead to significant harm in the future.

The duty of candour - CQC

 

You are newly added, not still there from before. It's a very brief entry in the Cochrane Archie database. In fact you may not be a member as you have to sign up to the terms and conditions which you won't have done! You are probably listed as a supporter - you can check here https://account.cochrane.org/

 

I think there was only one long reply to me which addressed a fairly long list of points - quite early on. Maybe we had more of a to and fro - I can't remember. But I read everything you or anyone else sends me. I think any other emails I sent to the IAG address were to add to your database of feedback, and to keep you informed of what was going on with the Exercise and CBT review. I wasn't expecting a reply to those submissions. You do always acknowledge everything personally so I know you've got it. Thank you.

 

Not sure if this info has been posted here or elsewhere

https://twitter.com/user/status/1383270981016326148

 

2020 is the time I mean. I checked it & can't see why you said it appears I became a member.

 

I have probably misunderstood. I thought being in the Cochrane contact database meant you were also a member, but I realise that's not right as you have to first agree to the terms and conditions to be a member these days. Sorry.

 

At the very least, it will be hard to argue that we have had any influence on the process. This thread and many emails can be taken as evidence of that. I can see the value in that, even if accidental. It's basically the main argument whenever the outcomes go against the behavioral model, that "activists" ruined everything by... participating, I guess?

I just hope we can put the politics behind soon and move on to actually improving the lives of millions.

 

Cochrane have responded to COPE in two days flat. They have (finally) posted the editorial notes on the plain language summary pages.

https://www.cochrane.org/CD003200/DEPRESSN_exercise-treatment-adults-chronic-fatigue-syndrome
https://www.cochrane.org/CD001027/DEPRESSN_cognitive-behaviour-therapy-chronic-fatigue-syndrome

They still do not address the two main points of my complaint which are:-

1. Following the findings of both reviews could cause harm to patients
2. There was no rationale for their decision not to withdraw the reviews, and no independent review of their decision.

The editorial note on the Exercise review links to a news item written in October 2019 about the new review. It contains a statement from the Editor in Chief which is incorrect https://www.cochrane.org/news/cfs

“By forging better relationships with patients, as well as the groups that represent them and the clinicians who seek to treat them, we can improve the way in which future Cochrane Reviews in this area address important questions and meet patients’ and clinicians’ needs. I can confirm that work will begin on this new review at the beginning of 2020 and that we will keep patient groups regularly informed of progress during the subsequent months.”

Patient groups have not been kept informed of progress on the review.

[Edited to remove reference to correspondence]

 

Completely the opposite. These people, like so many, are very good at saying the right things, and 100% useless at living up to what they say. I have no respect for people like that, because it is knowingly devious and deceitful.

 

There'll be a section on this in the first public report - and planning to do monthly public reports from then on.

 

Timeframe's coming together - should be clear in the coming days.

 

I admire your optimism!

 

In April 2020 we were told that the first progress report would be published “soon”. A year later we were told that it would be published “soon”. I would therefore guess that it will start soon.

I don’t understand why we haven’t had progress reports every month since the process started at the beginning of last year. If there was no progress we should have been told that and given an explanation.

For me, the pandemic is not an acceptable excuse. The anticipated increase in prevalence of ME/CFS due to Covid-19 only increased the importance of ensuring that the reviews were updated as quickly as possible. If those who were supposed to be working on it couldn’t dedicate their time to the process then other people should have been appointed.

The secrecy around the process to date is the very opposite of what we were promised, but absolutely consistent with the way that people with ME have been treated by Cochrane since its inception.

 

Yes.

 

Unfortunately I have no doubt Cochrane was never and is still not aware of this relation, let alone how significant it is. That's the outcome of obsessing over unspecified fatigue (especially an alternative definition of fatigue) and completely severing the outcome from its onset. "More therapy, less T-cells", as one head honcho said.

Which granted makes them look horribly unable to keep up with reality, but then that's on brand given where we are, 15 years or so after the publication of the first review. They really should have seen that coming since the patients and actual experts did. But hardly anyone in medicine sees the relation yet so no one is expecting others to know any better. Up-to-date isn't up-to-date either, barely anyone is. It's all "BRAND NEW", yet familiar. Ugh.