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

Earlier this week, I sent this letter to Hilda at her IAG e-mail address :
(See also this post above.)

Dear Hilda,

Thank you for replying to my e-mail when I asked you to inform people with ME/CFS if not about an update, then at least about the delay and whether the IAG was still working.

This was last June.

I hope you didn't mind that I shared the scarce information you provided with S4ME people. Sorry if you did.

(I didn't post myself on the forum because was too brain-fogged at that time so asked the moderation team to post).

I felt obliged to share the information -- why should only I have the privilege to get an answer? I thought and felt that others have the right to know. By others I mean anyone else who's affected both by this horrible illness and by how it is dealt with by health care practitioners, by health insurance, by people who decide on our existence and do this backed up by a Cochrane review that still claims a certainty of evidence that many reasonable people have found isn't there.

It took me much energy to write these lines, and an incredible amount of time compared with the energy and time my past healthier self would have needed and even compared with what I can do on rare better days. Please keep that in mind and sorry if I can't find appropriate wording for a formal e-mail.

I still try to think that you probably did the best you could do, and I understand that the process of the update needs some confidentiality. I just can't understand why you/ Cochrane seem not to be able to communicate at least about the formal steps and delays in the process.

Now I share the thoughts S4ME member Trish expressed on the forum:

"This must surely be crushingly disappointing too to the patients and carers and decent clinicians who volunteered to participate in this fiasco."

I'll post this e-mail on the forum and would also again post any information on this matter obtained by you in a potential reply even if this even more reduced the chances to get another answer.

Very disappointed that at Cochrane either nobody has a sense of accountability or those who do seem to be silenced.

Best wishes,
MSEsperanza
 
I'm not sure it's worth writing to Bastian. I don't know what happened but this is no different than nothing happening. Either she abandoned quietly or frankly it doesn't even matter, the process is so awful that it's no better than nothing. All in secret behind closed doors with zero concern for the patients harmed.

It's Cochrane that is responsible here. I don't buy much about that "independent" part. It was recognized that the review is terribly flawed 6 years ago. It's completely absurd the way they toy with millions of lives.

There's also a matter of timing. Right now Cochrane is being justifiably reamed for their terrible review about masks that manages to contradict physics. It's getting the same kind of attention that this deserves, for all the harm this review continues to do. It has lead to many headlines and editorials in recent days.

Easy to say that when I can't contribute, but I think this is the only tree to bark at for now. I'm sure they don't care one bit about the patients, but they do care about their unearned reputation as a private club of influencers.

Maybe something similar to the PACE letter. Maybe it's possible to get more signatures with the growing number of MDs who understand LC well enough. It keeps being cited in LC guidelines and recommendations, it's harming them just as much as us.
 
I think it was definitely worth writing to Hilda Bastian to ask what is going on.

It's possible she and the patient advisory group are as much in the dark as we are.

The last we heard back last June was that they were still waiting to see a draft protocol from the review writing group. I suspect that group haven't managed to agree a protocol and keep delaying getting on with it.

If that's the case we should be told, and the whole thing should be scrapped, the existing inaccurate review withdrawn, and replaced by the review done by NICE.
 
Oh it was worth writing, although even the 2 year mark was already way too long. Just no longer because of the total communication blackout and lack of any progress whatsoever. If the IAG is in the dark about what they're doing... boy, I don't know. I don't think anything's happening anymore, we're just being toyed with.

By writing I mean a public letter shared as widely as possible. Doubtful it changes anything but it will be yet another black mark on them whenever the stalemate is ended. When they will say they didn't know, there will be so much evidence that they did and simply didn't care.
 
Trish said:
I think it was definitely worth writing to Hilda Bastian to ask what is going on.

It's possible she and the patient advisory group are as much in the dark as we are.

The last we heard back last June was that they were still waiting to see a draft protocol from the review writing group. I suspect that group haven't managed to agree a protocol and keep delaying getting on with it.

If that's the case we should be told, and the whole thing should be scrapped, the existing inaccurate review withdrawn, and replaced by the review done by NICE.
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Yes, interesting what you say about the protocol and NICE. I was reading this BMJ article today https://www.bmj.com/content/380/bmj.p382?utm_source=substack&utm_medium=email.

You don't need to read the whole thing, but towards the end it says

"Cochrane, an international organisation that has built its reputation on delivering independent evidence reviews, has yet to publish a systematic review of gender treatments in minors. But The BMJ has learnt that in 2020 Cochrane accepted a proposal to review puberty blockers and that it worked with a team of researchers through 2021 in developing a protocol, but it ultimately rejected it after peer review. A spokesperson for Cochrane told The BMJ that its editors have to consider whether a review “would add value to the existing evidence base,” highlighting the work of the UK’s National Institute for Health and Care Excellence, which looked at puberty blockers and hormones for adolescents in 2021. “That review found the evidence to be inconclusive, and there have been no significant primary studies published since.”

When I highlighted the evidence of NICE finding the evidence for exercise and CBT to be low or very low contrasting with the evidence in the Cochrane review of exercise being "moderate", they were not bothered that their review contradicted NICE. They were also not bothered that a new review would not add to the existing evidence base. I remember Hilda saying my point was irrelevant because NICE and Cochrane methods are different or something. Yet in this case Cochrane are saying they don't want to duplicate the work of NICE on puberty blockers in 2021. Why is it OK therefore to insist on duplicating NICE's work on treatments for ME/CFS? I will write and ask. And maybe fire off a Tweet tagging Hilda, just for fun
 
Trish said:
I think it was definitely worth writing to Hilda Bastian to ask what is going on.
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I emailed Hilda on 14 February but I’ve not received a reply. I will post any reply here if I get one and she consents – unless she posts a reply here herself, which I suggested.

Caroline Struthers said:
I will write and ask. And maybe fire off a Tweet tagging Hilda, just for fun
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I Tweeted her before I emailed. She appears to have left Twitter for Mastodon, which I don’t currently use.
 
Robert 1973 said:
I emailed Hilda on 14 February but I’ve not received a reply. I will post any reply here if I get one and she consents – unless she posts a reply here herself, which I suggested.

I Tweeted her before I emailed. She appears to have left Twitter for Mastodon, which I don’t currently use.
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I looked at Mastodon once and found it very confusing....so never ventured there.
 
Just wrote to Hilda

Dear Hilda

I have been questioning the decision for Cochrane to produce an update of the Exercise review including a new protocol since the plan was announced. One of my arguments was that at the time Cochrane announced the plan for the update, NICE were already undertaking a review of all treatments for ME/CFS to find evidence to inform their new guideline (now published), so it would be a wasteful duplication of effort.

Today I read an article in the BMJ about gender treatments for young people (https://www.bmj.com/content/380/bmj.p382) and noticed a paragraph about Cochrane’s decision not to produce a review because NICE had already done it. See quote below

“Cochrane, an international organisation that has built its reputation on delivering independent evidence reviews, has yet to publish a systematic review of gender treatments in minors. But The BMJ has learnt that in 2020 Cochrane accepted a proposal to review puberty blockers and that it worked with a team of researchers through 2021 in developing a protocol, but it ultimately rejected it after peer review. A spokesperson for Cochrane told The BMJ that its editors have to consider whether a review “would add value to the existing evidence base,” highlighting the work of the UK’s National Institute for Health and Care Excellence, which looked at puberty blockers and hormones for adolescents in 2021. “That review found the evidence to be inconclusive, and there have been no significant primary studies published since.”

I hope Cochrane will come to the same sensible conclusion about the Exercise review, and announce that soon. The existing Cochrane review is now well over two years out of date, and contradicts NICE’s review findings. This has caused confusion, and led to prominent people associated with Cochrane to accuse NICE of “a disastrous misapplication of GRADE” (https://www.bmj.com/content/371/bmj.m4774/rr-7). I hope Cochrane will reconsider its decision not to withdraw it.

With best wishes

Caroline
 
Caroline Struthers said:
When I highlighted the evidence of NICE finding the evidence for exercise and CBT to be low or very low contrasting with the evidence in the Cochrane review of exercise being "moderate", they were not bothered that their review contradicted NICE. They were also not bothered that a new review would not add to the existing evidence base. I remember Hilda saying my point was irrelevant because NICE and Cochrane methods are different or something. Yet in this case Cochrane are saying they don't want to duplicate the work of NICE on puberty blockers in 2021. Why is it OK therefore to insist on duplicating NICE's work on treatments for ME/CFS?
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this is an interesting point.
 
dave30th said:
this is an interesting point.
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Pretty similar to the choice of long-term follow-up and how they were argued differently depending on ME or... I think it was depression? Different people, yeah, but it seems to be a standard in EBM, certainly the norm in BPS circles.

It's almost as if their arguments are bespoke to what they desire and can contradict each other without skipping a beat. If they didn't have double standards, they wouldn't have any.
 

This tweet from Hilda in July of 2022 cemented for me that she is not an ally of pwME in the sense that she doesn’t feel the moral weight or righteousness of our struggle and can’t be counted on to act in our best interest. Perhaps it was my mistake for ever believing she was based on her prior sympathetic writing. Her claim that Cochrane cares about us is galling in light of what they’re doing with this actively harmful review.
 
I suppose even dyed-in-the-wool BPS proponents might feel that they do really care about people with ME/CFS. I'm sure Garner feels as though he is protecting people with ME/CFS from ourselves and from those nasty loud activists who want to debunk effective treatments. I guess they think the longer the existing review stands, the better it is for people with ME/CFS. Of course the fact that their interests align with doing what is best for people with ME/CFS is just a happy coincidence.

But, I don't think anyone can reasonably suggest that Cochrane have shown respect to people with ME/CFS, and kept promises. "lack of formal reports"? I'm not sure why the distinction of 'formal' has been made. It's not as if there have been any other sort of reports either.

Where Hilda has landed on all this is very hard to tell. From here, it's hard to see any sense of urgency. I guess I'd just say to her, 'justice delayed is justice denied'. Each day that the old review is not withdrawn or not replaced with something sensible, more people are harmed. Even if the old review was properly pulled tomorrow, it will take years, maybe even decades, to change the clinical guidelines and the clinical certainties in the minds of doctors around the world that have been built on it.
 
I think it's possible the lack of progress is not under Hilda's control.

It is up to the review writing group to produce a draft protocol first, then the PAG can start work by commenting on it.

As far as I'm aware, no draft protocol has been produced, or if it has, there hasn't been agreement that it's ready for public consultation, which was supposed to be the next step.

The fact that no public consultation on a protocol has started after several years tells me the group appointed to write the review has failed and should be sacked.

Edit to add. I think it's possible those with our best interests at heart are being blocked by others, even by others outside either the review group or PAG - we simply don't know what's happening.

I hope someone is keeping records of all correspondence relevant to why there is a lack of progress and will have the courage to make it public.
 
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Trish said:
I think it's possible the lack of progress is not under Hilda's control.

It is up to the review writing group to produce a draft protocol first, then the PAG can start work by commenting on it.

As far as I'm aware, no draft protocol has been produced, or if it has, there hasn't been agreement that it's ready for public consultation, which was supposed to be the next step.

The fact that no public consultation on a protocol has started after several years tells me the group appointed to write the review has failed and should be sacked.

Edit to add. I think it's possible those with our best interests at heart are being blocked by others, even by others outside either the review group or PAG - we simply don't know what's happening.

I hope someone is keeping records of all correspondence relevant to why there is a lack of progress and will have the courage to make it public.
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Hilda said all the correspondence to and from the IAG email address will be made public. Whether this commitment will be honored, I don't know
 
Hilda Bastian’s tweet does not necessarily indicate she is part of any blocking or delaying tactic. She says:

“I agree the lack of formal reports on progress is bad. I'm expecting that to be over soon & can then discuss it. Those suggestions - that it's because Cochrane doesn't care about people with ME/CFS or that it's because of my bereavement - aren't the only possible explanations.”

My interpretation is she is saying that currently her hands are tied in relation to something she is not at liberty to discuss. Though the failure of Cochrane to move this forward and/or formally withdraw the obsolete review is unacceptable and a potential source of harm to people with ME/CFS we do not currently have enough information to attribute this failing to any individuals.

However we can and should be holding Cochrane collectively responsible. Is a petition with such as change.org a useful way to try to shame the Cochrane hierarchy into action?
 
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