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

There's something puzzling me about this whole situation.

A group of people with ME, ME researchers and clinicians, and others who are supposed to understand how to do a scientific research review have been invited by Cochrane to join two groups -

- one to prepare a protocol, get it agreed by the other group, and then proceed to produce a new review of exercise treatments for ME and their effectiveness or otherwise, largely work already completed thoroughly and published in detail by NICE very recently, so all the group need to do is check it and publish the same findings NICE did.

- and a second group to provide ongoing feedback on the process from the perspective of patients at each stage and report back publicly on progress.

As far as I know none of them signed confidentiality agreements or were made to promise not to let anything slip about where the process is up to on pain of expulsion or worse.

Yet all we get is deafening silence.

Has Cochrane turned into a secret society?
 
Trish said:
There's something puzzling me about this whole situation.

A group of people with ME, ME researchers and clinicians, and others who are supposed to understand how to do a scientific research review have been invited by Cochrane to join two groups -

- one to prepare a protocol, get it agreed by the other group, and then proceed to produce a new review of exercise treatments for ME and their effectiveness or otherwise, largely work already completed thoroughly and published in detail by NICE very recently, so all the group need to do is check it and publish the same findings NICE did.

- and a second group to provide ongoing feedback on the process from the perspective of patients at each stage and report back publicly on progress.

As far as I know none of them signed confidentiality agreements or were made to promise not to let anything slip about where the process is up to on pain of expulsion or worse.

Yet all we get is deafening silence.

Has Cochrane turned into a secret society?
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it is a charity so it can be as secret as it wants to be. As one who worked for Cochrane, and knew some of its secrets, the main problem is that its procedures and policies are so complicated, inefficient and jargon-heavy you wouldn't make head or tail of it.
 
Hmm, I sort of get that, but can a charity that is taking public money refuse to reveal what is happening in a project that affects millions of lives, and which they had publicly undertaken to do with patient participation?

This inaction may be legal but it's unethical while they continue to leave the old discredited review in place.

I imagine this is all very frustrating for the patient and carer reps.
 
Charity Governance Code
Openness and accountability

"Communicating and consulting effectively with stakeholders
  1. The board identifies the key stakeholders with an interest in the charity’s work. These might include users or beneficiaries, staff, volunteers, members, donors, suppliers, local communities and others.
  2. The board makes sure that there is a strategy for regular and effective communication with these stakeholders about the charity’s purposes, values, work and achievements, including information that enables them to measure the charity’s success in achieving its purposes.
  3. As part of this strategy, the board thinks about how to communicate how the charity is governed, who the trustees are and the decisions they make.
  4. The board ensures that stakeholders have an opportunity to hold the board to account through agreed processes and routes, for example question and answer sessions."
 
Trish said:
Hmm, I sort of get that, but can a charity that is taking public money refuse to reveal what is happening in a project that affects millions of lives, and which they had publicly undertaken to do with patient participation?

This inaction may be legal but it's unethical while they continue to leave the old discredited review in place.

I imagine this is all very frustrating for the patient and carer reps.
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The total radio silence is pretty odd, even for Cochrane. I am not sure how they are going to extricate themselves from this, but they have weathered many a storm before. I'm sure it won't make a blind bit of difference, but I will submit another complaint to the charity commission
 
Caroline Struthers said:
The total radio silence is pretty odd, even for Cochrane. I am not sure how they are going to extricate themselves from this, but they have weathered many a storm before. I'm sure it won't make a blind bit of difference, but I will submit another complaint to the charity commission
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Maybe worth approaching APPG to see if there are parliamentarians willing to work with you on raising this with charity commission or Cochrane.
 
Yes, the APPG, or at least some members, may be happy to raise the issue - can you link it to NICE linking up with Cochrane?
Good old fashioned "chumminess", mixed with a dose of uncaring (not their family, friends etc.) and what seems like incompetence i.e. NICE/Cochrane agreement.

Might be worth trying both APPGs - covid and ME/CFS.
 
Oh, wow. I had completely forgotten this was "happening" at all.

There have been tens, if not hundreds, of thousands of people with LC who have gone through exercise programs by now. Without a single trial of anything. Based on the evidence for ME. Even though the evidence is very low quality. They dealt with that effectively by literally not caring about evidence. It clearly doesn't even matter to anyone, whatever feels true.
 
One thing I'm confused, or maybe angry, about is that so many thousands have gone through those programs recently, with endless opportunities to assess outcomes, with proper controls and methodology, far better than biased trials performed by ideologues. And yet it's not happening at all, because no one wants to break the illusion.

So why aren't real-life outcomes being assessed for something that's in such common use that healthcare services were set up immediately with this? Real-life outcomes are always more important than whatever happens in the lab. And yet there is not only blanket refusal to assess those outcomes, there isn't any interest in actually assessing the evidence base either. Instead we see political games and behind-the-scenes power plays conspiring to keep invalid evidence published and essentially blocking an honest assessment, knowing it would break the illusion, ruin careers and generally make a few people sad.

It's beyond clear that those trials are useless at telling anything useful. I know the answer why, but still it's incredible that this is happening, about such important issues affecting so many people, and this late into the 21st century. It's just not taken seriously. The evidence is taken for granted as perfect and infallible, even though it's so indefensible that most programs who do GET insist they don't do GET, even though they rely on evidence for GET.

I have rarely seen anything as broken as this whole evidence-based medicine thing. It's truly a formalized Emperor's new clothes insanity.
 
A member of the forum has passed on the information for posting here that they emailed Hilda on 30 May 2022 and asked Hilda to communicate about the delay in the IAG's work. They also referred to comments on this thread:

https://www.s4me.info/threads/indep...ed-by-hilda-bastian.13645/page-93#post-410004

https://www.s4me.info/threads/indep...ed-by-hilda-bastian.13645/page-92#post-409951

Hilda replied on 21 Jun 2022 apologizing both " for the delays in public reports on what's happening" , and for how long it's taken to reply to the email.

Hilda also wrote:

"We're in the process of preparing an update on progress, including plans for wider consultation."
 
Trish said:
We're in the process of preparing an update on progress, including plans for wider consultation
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Well another milestone has been passed which should be a final nail in the coffin of this pointless project. After the milestone of the NICE guideline and damning evidence review, the next one is the publication of the top ten research priorities https://psp-me.co.uk/. Exercise is not in the top ten. So what is the point of doing a review of exercise? It is officially not a priority. Iain Chalmers, founder of Cochrane, also founded the James Lind Alliance which runs these Priority Setting Partnerships. Can Cochrane really argue that an update of the exercise review should still go ahead now these priorities have been published? Cochrane could potentially help with priority 2. I will write and suggest this to Hilda.
 
Just sent a short email - I realize the grammar went a bit wrong, but I'm sure Hilda will get the idea

Dear Hilda

In May the Priority Setting Partnership for ME/CFS published the top ten research priorities https://psp-me.co.uk/. Exercise is not in the top ten. And it didn’t make the long-list either (https://psp-me.co.uk/take-part/questions-long-list/). NICE have done an independent and comprehensive review of the research on exercise and found the trials were mainly very low-quality, leading to it being dropped as a recommended treatment. This coupled with the fact the PSP did not include research of exercise for ME/CFS as a priority, I hope Cochrane will abandon the review update and withdraw the 2019 review which still claims there is moderate quality evidence that exercise may have a (non-zero) effect (on people who may or may not have ME/CFS). At first glance I thought that Cochrane could potentially help with priority 2, but I realise what’s needed first is primary studies on these potential drug treatments. Although I guess there may already be some trials out there

With best wishes

Caroline
 
rvallee said:
I have rarely seen anything as broken as this whole evidence-based medicine thing. It's truly a formalized Emperor's new clothes insanity.
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On that, we have a thread with Cochrane's latest publicity around evidence-based medicine.
World EBHC Day : October 20 2022
It's all about partnerships. :)

Which reminds me, there is an enormous "Independent Advisory Group" supposed to be keeping this review on track and ensuring good communications with the public. What have they been doing for the last year?
 
2.5 years. And that's with Long Covid massively increasing the urgency to address this, as the exercise review is still the preferred evidence to support this pseudoscientific paradigm. So many more people have been hurt for nothing and continue to be. Just complete indifference to patient outcomes, as long as egos are stroked and reputations are protected, that's all that matters to Cochrane.

Cochrane, the fake-gold-plating-that's-actually-cheap-plastic standard of evidence-based medicine.
 
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