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

Trish said:
Hilda Bastian, I hope you have found your way to reading this forum. If so, welcome, and I'm very pleased you are going to be leading this group. As you will see, if you explore the forum, we have a wide variety of members, including patients, carers, scientists, doctors, supporters... with a wide range of views on everything to do with ME, and a willingness to express those views!

But one thing I think we are all united on is what a disaster for people with ME the whole 'Exercise therapy for ME' has been for 30 years, and continues to be, thanks largely to the power of a small group of doctors and therapists, and some very bad science. Not helped by Cochrane and NICE being so slow to begin to recognise there is a problem.

I hope the current NICE review, and the new approach by Cochrane will emphatically change their conclusions. I wonder, now you have a defined position in the process for the new review, whether your first move could be to ask that while the new review is under way, the current review could be withdrawn?
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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
 
Hilda Bastian said:
Am I still there? I thought I had been removed. (It turns out they had added a bunch of people who qualified for membership from past involvement that had apparently been overlooked and emailed us to let us know: while it's true I qualify for membership, I do not want to be one.)
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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/
 
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Hilda Bastian said:
I had the impression you were reading my replies - should I re-send them if you've only seen one?
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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.
 
Caroline Struthers said:
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/
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2020 is the time I mean. I checked it & can't see why you said it appears I became a member.
 
Hilda Bastian said:
I'm definitely hoping you won't give up. My uninformative responses are because I don't want to pre-empt the report, and I'll be more responsive afterwards, and as this moves forward.
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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]
 
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Caroline Struthers said:
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]
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There'll be a section on this in the first public report - and planning to do monthly public reports from then on.
 
NelliePledge said:
When will that start?
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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.
April 2020:


April 2021:
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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.
 
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Cochrane said:
“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.”
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Hilda Bastian said:
There'll be a section on this in the first public report - and planning to do monthly public reports from then on.
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Lets face it the Cochrane statement in the first place is very poor in terms of patient participation. Keeping patients informed is not patient participation its just telling people stuff is happening. Patient participation is about involving patients in the actual review processes including things like the design of any protocol and taking feedback seriously. This really isn't happening.

As far as I am concerned there is no point of a review since there is no reliable evidence to review. But I can see that looking for reliable evidence is a first stage but that also means having definitions and criteria as to what reliable is and having a discussion of that - and including patient in that. I know patients have been saying what we think constitutes unreliable including things like subjective measures in open label trials are unreliable and that the subjective measures themselves are unreliable but have we been listened to- No idea? Is there any definition? And we are more than a year into the process where as this should have been realy quick.
 
Cochrane could have explored very different ways to approach a review more as an 'open source' type project than a small group of 'experts' telling people what they think approach. There is room for real innovation for any organization who really wants to transform the way patients are included in research and reviews.
 
Robert 1973 said:
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.
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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.
 
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