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

I'm gradually working my way through the document and there are some good bits, but it feels like the whole process so far has been so opaque that I had no idea when we discussed on this thread with @Hilda Bastian that this, and Twitter chats, were being considered a consultation process.

If we had a clearer idea of this agenda, we might have fed more specific information and concerns into the process and suggested names of people who would be valuable as IAG members or review authors. I, for one, kept waiting to be invited to comment...

I identified 28 published critiques by internet searching. I compiled these into a public Google spreadsheet, and in May 2020, circulated this to the early members of the IAG, engaged in discussion in the Science for ME online forum, and posted it on Twitter to ensure the collection of comments was as comprehensive as possible, particularly for those made by people with ME/CFS.

After a suggestion by MSEsperanza on the forum, an additional open sheet was set up, to which material could be added by anyone. These comments did not need to meet the criteria of directly addressing the Cochrane review, and being publicly available. Later, several unpublished documents submitted to the IAG were added, including two papers on related methodological issues submitted by Science for ME. Some discussion threads on Twitter and the Science for ME forum were also included.

This information gathering expanded the collection of critiques to 48 sources, from 2008 to 2020. (The protocol for the original review was published in 2001. The first version of the review was published in 2004, and the current version was published in 2019.) Many thanks to everyone who helped fill out this collection!
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It does look like a good list of critiques has been included. I hope people here will check the lists and ensure that it's comprehensive.
 
@Hilda Bastian I am sorry my comments today have been rather grumpy. I can see that you have put a lot of thought and effort into this process so far, and according to your brief have acted fairly. I thank you for doing your best and hope that now the process has started to become more open, and a structure of engagement is starting to become clearer, we will be able to have more meaningful input.

I think the dragging out of the whole process by Cochrane, first of not withdrawing the current Cochrane Exercise for CFS review when the changeover of chief editor happened just as Tovey had almost achieved getting it withdrawn, and the implications of that review continuing to stand for YEARS after the problems with it have been pointed out comprehensively. Then promises of patient involvement taking so long to even begin to come to fruition... Alongside seeing distressingly awful crap about GET continuing to be published, including just yesterday, one of the PACE authors publishing a paper saying GET does no harm...

So the sum total of Cochrane's involvement in ME/CFS has been decades of harm to probably hundreds of thousands, if not millions, of patients... And still we wait for crumbs.

Well, I think you can see it reaches the stage where despair sets in.

As someone with 31 years ME, and carer for a daughter with 23 years ME, both severe for many years, and with the only medical 'help' a GP who said on the phone with me the other day in my first very brief contact in over a year, 'Oh, do you have pain, how long have you had that'. And she is our only medical 'help'. The only 'medical advice' we have had over the years is 'try to get more exercise'.

And this same story and worse are being played out all over the world every day. National guidelines are being written with this and the equally awful CBT for CFS review as 'evidence'. Every day's delay causes more harm.

Cochrane, along with NICE and the authors of the studies used to support them have, metaphorically speaking, blood on their hands.

Although there are some good people on the Advisory group and the list of Review Authors, I am not confident there is sufficient expertise there to dig into the flaws of the clinical trials and write a review that does more than yet another 'statistical analysis' of data so flawed as to be worthless. I hope I am proved wrong.
 
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Trish said:
a review that does more than yet another 'statistical analysis' of data
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With the assumption that the authors of these studies are totally trustworthy and not hiding the harms in creative ways that cannot be discovered from the published information.

Getting worse from overexertion is obvious that it's really a mystery how the studies are achieving such low rates of harm (<10%). The >50% of patients harmed in surveys is much more realistic.
 
This is the link to the latest update on the role of the independent advisory group, and how we can be involved:
https://community.cochrane.org/orga...eholder-engagement-high-profile-reviews-pilot

I note particularly:

Quotes:

'The complete updating process for the review is expected to be complete early in 2022. There will be monthly reports on progress from June 2021.'

'A draft protocol will also be available for a brief public consultation period, which is anticipated to be in the third quarter of 2021.'

'People can communicate directly with the IAG via the email address, Cochrane.IAG@gmail.com.'

'In addition to the IAG itself, the IAG lead will convene an email discussion group for groups representing people living with ME/CFS. The IAG lead, in consultation with other participants, will also develop other opportunities for stakeholder engagement.'
 
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@Hilda Bastian I echo every word of Trish's comment here
Trish said:
@Hilda Bastian I am sorry my comments today have been rather grumpy. I can see that you have put a lot of thought and effort into this process so far, and according to your brief have acted fairly. I thank you for doing your best and hope that now the process has started to become more open, and a structure of engagement is starting to become clearer, we will be able to have more meaningful input.

I think the dragging out of the whole process by Cochrane, first of not withdrawing the current Cochrane Exercise for CFS review when the changeover of chief editor happened just as Tovey had almost achieved getting it withdrawn, and the implications of that review continuing to stand for YEARS after the problems with it have been pointed out comprehensively. Then promises of patient involvement taking so long to even begin to come to fruition... Alongside seeing distressingly awful crap about GET continuing to be published, including just yesterday, one of the PACE authors publishing a paper saying GET does no harm...

So the sum total of Cochrane's involvement in ME/CFS has been decades of harm to probably hundreds of thousands, if not millions, of patients... And still we wait for crumbs.

Well, I think you can see it reaches the stage where despair sets in.

As someone with 31 years ME, and carer for a daughter with 23 years ME, both severe for many years, and with the only medical 'help' a GP who said on the phone with me the other day in my first very brief contact in over a year, 'Oh, do you have pain, how long have you had that'. And she is our only medical 'help'. The only 'medical advice' we have had over the years is 'try to get more exercise'.

And this same story and worse are being played out all over the world every day. National guidelines are being written with this and the equally awful CBT for CFS review as 'evidence'. Every day's delay causes more harm.

Cochrane, along with NICE and the authors of the studies used to support them have, metaphorically speaking, blood on their hands.

Although there are some good people on the Advisory group and the list of Review Authors, I am not confident there is sufficient expertise there to dig into the flaws of the clinical trials and write a review that does more than yet another 'statistical analysis' of data so flawed as to be worthless. I hope I am proved wrong.
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Looking for the fundamental flaws in the evidence is not best done by those who have proved themselves already obtuse to them, so I too hope & pray that we are proved wrong.
I thank you for all your hard work Hilda & wish you all the best with the process, i recognise it wont be the easiest project you've worked on!
 
Trish said:
Although there are some good people on the Advisory group and the list of Review Authors, I am not confident there is sufficient expertise there to dig into the flaws of the clinical trials and write a review that does more than yet another 'statistical analysis' of data so flawed as to be worthless. I hope I am proved wrong.
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Yes. As someone said to me recently, the members of Science for ME earned their place at the table, for this review. Current members and those no longer with us are the reason there is a review.

No organisation has a higher concentration of expertise in the evaluation of relevant papers; that is pretty much our reason for existing. And yet S4ME has no place in the IAG, much less the review writing team?

While Mary is great, the people specifically representing people with ME/CFS on the writing team are
1. the mother of someone with ME/CFS, and
2. someone explicitly selected because she is 'not an activist'.

I'd understand that if there were no good people with ME/CFS capable of the task, but that's just not true. There are at least a dozen people I can think of who are deeply familiar with the issues the GET trials have and would bring useful knowledge and skills, and be perfectly capable of contributing constructively. The conclusion is inescapable, Cochrane does not want expert patients on the writing team.

Maybe it will all work out fine, I hope so. But it is not right that we have to just hope on the sidelines about something so important to us.
 
Another massive disappointment. Where are the people who have been fighting for a proper review? I am not convinced that there is anyone on this panel who understands the issues and the science.

I am a great admirer of Lily Chu, but find the experts from the US do not understand the depths of the problem with the rubbish research that pours out of the UK BPS clique.

If they were not able to make a formal announcement asking for nominations for patient representatives that was clear enough for S4ME to understand what hope is there for a decent review?

It is vital that severe ME is taken into account. The 25% group (not represented) found that many of their members had not been severe until they had been forced to exercise, does the whole panel understand this?

Is someone who also has issues with depression which can be improved by exercise going to understand that exercise has no positive effect on ME, none, nothing at all. We continually do more than we know we ought to so if our ME was getting better we would have no need to build up a level of activity.

I share the experience of many that I thought I was improving, did more and more then crashed to the point I have not walked for 23 years.

I feel betrayed again but would welcome being proved wrong.
 
Hilda Bastian said:
Firstly, I agree that the long period without a public report was a serious problem: I can't do more now than apologize for that, and am happy to discuss how that came to be - with all the pressures of the pandemic, much that needed to be re-negotiated, and the desire to still reach the same goal, things didn't go according to the original plan.

I'm sorry if it wasn't clear that people were welcome to contact us with suggestions etc - in the March posting, we said suggestions were coming in. My apologies if it wasn't clear that this was welcome. We did note the email address to which enquiries could be directed.

When I became familiar with the open letter, I emailed S4ME, asking to whom I could respond (that was 19 May 2020). I replied exactly as I advised to, sending my answer to the open letter on 31 May 2020. There, I indicated that S4ME was being considered. This was at the same time as my participation in this Forum was being discussed. I consider my involvement in this Forum engagement with S4ME, and would think many others would see it that way. Indeed, I have received several messages from people thanking me for it, including encouraging me not to be deterred by the frequently discouraging comments made here. I have responded to every email I got from S4ME, and as I indicated in the report, added documents submitted by S4ME for IAG consideration to the list of past comments/critiques analyzed.

There were clearly discussions with multiple organizations representing people with ME/CFS - obviously the organizations which are now represented on the IAG, but others as well. Indeed, there were discussions ongoing with Cochrane with some people even before I was involved. I also obviously followed discussions on that topic - here, on Twitter, at other ME/CFS organizations, etc. The ultimate decisions about appointments, however, were mine: although I had lots of discussions and considered the advice of quite a few people with ME/CFS, none of those people should be considered responsible for any deficiencies people see with any of this.

Membership of the IAG was always going to be limited, and so could not be the only vehicle for groups' involvement in the process, and it won't be, now that the "hot" phase of the review from an external point of view has begun. And finally, I think it's important to keep in mind that, as described in yesterday's report, there is still a position on the IAG that the IAG will decide on. All the people and groups that indicated interest in participating will be considered, along with discussions and suggestions from that group about how to go forward with this.

I agree, of course, that there have been many weaknesses with the process so far - but I don't think non-communication by me with S4ME is one of them.
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MSEsperanza said:
And for now, as it seems that S4ME weren't invited in any way, and since I don't know when or if I will be able to reply properly, just two questions:
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Mithriel said:
If they were not able to make a formal announcement asking for nominations for patient representatives that was clear enough for S4ME to understand what hope is there for a decent review?
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To keep our members informed, S4ME was informed at 10:00am UK time that we weren't selected to be one of the patient representatives on the advisory group.
 
Michael Clarke:

His handiwork:

https://www.ox.ac.uk/admissions/graduate/courses/msc-evidence-based-health-care

This doesn't provide details which would be illuminating.

My preliminary feeling on this is to put Cochrane well out of mind and concentrate on possible positive developments in the biomedicine of ME. As we know understanding that is likely to make whatever else is said moot.

So much effort being made on behalf of exercise and how much under what circumstances. Yet this is much easier to figure out all on our own over time as sick people.

And although it is not what is under advisement here it would be so much more helpful if that level of effort that has gone into when and how to exercise was put into meeting the needs of PwME in terms of home care, aids, guidance on hospital visits and a long list of other social /medical needs.

Along with ramping up biomedical knowledge.

From that POV this huge absorption of time being forced to deal with something so peripheral to our well-being as exercise is a tragic waste if rather necessary to put an end to the harm that it has caused.
 
Andy said:
I consider myself reasonably well connected and plugged in to the UK, and less so internationally, ME advocacy community. I mean no disrespect to George Faulkner, but I didn't recognise his name and it has now taken a Google search to be reminded that he has written about the review and issues with GET. I predict that the vast majority of UK pwME will be in exactly the same boat.

I note that he is listed under "Individuals who had been involved in discussions with Cochrane preceding the IAG" and as an "independent researcher" - therefore, even though I thank him for writing about these issues, I still do not see myself represented.
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To temper my comments on George a little, he is the author of "In the Expectation of Recovery", https://www.centreforwelfarereform.org/library/in-the-expectation-of-recovery.html, an in-depth look at PACE, which was published shortly before S4ME launched.

It was linked to in the article discussed here, Will The UK Establishment Finally Stop Denying The Reality Of ME? Huff Post and David Tuller has referenced it around that time as well.

In 2015, he had an article published in the Lancet Psychiatry, "In non-blinded trials, self-report measures could mislead", https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00089-9/fulltext, and he has also contributed to the Dialogues to a Hidden Illness project.
 
Adrian said:
It seems a shame that your blog on the CFQ isn't listed in the set of documents reviewed (maybe I missed it). But it would be very very bad if a protocol used the CFQ in any form of review!
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From Hilda's article:
After a suggestion by MSEsperanza on the forum, an additional open sheet was set up, to which material could be added by anyone.
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I don't know whether it's too late to add more to this. I added Jonathan Edwards expert testimony to NICE this morning, as I couldn't see it anywhere on the lists. I suggest anyone go ahead and add any other documents even if it is past a deadline.
 
strategist said:
I don't mind if there are people from outside the community that opposes GET, as long as they do not have conflicts of interest. They should be easy to convince with the information that is available and their presence makes the review more credible.
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There would likely be accusations of bias otherwise. There will be accusations nonetheless, it's just noise, but we are still at the stage where we politics have to play out a bit.

As long as the process is rigorous I don't think it will matter. When it fails it's because no one is there to actually enforce it and people just push their position freely without regard for evidence or reality. This can't happen here and there are several people involved with genuine experience. Really pleased to see Davenport, he is a tireless (heh) advocate for physical therapy and truly understands the issue.

Most noteworthy is that no Cochrane group wanted it. That's puzzling, that there should be no group dealing with chronic health problems. Seems like a massive blindsight, but it certainly spells plainly the important chronic illness has in medicine: out of bounds.

There is a bittersweet effect however, knowing that the current review will stand for many more months, still doing harm, which unfortunately indicates better than anything Cochrane's commitment to patient safety: also out of bounds. That will continue to be a serious indictment of the ivory tower effect, how medical institutions are too far removed from patient outcomes to work in complete isolation without a representative sample of patient stakeholders holding them to account.

I especially like the need to look at the history spelled out clearly in the priorities. As long as this topic remains isolated from its context and history, including the total separation from both neurology and infectious diseases, it's simply impossible to make progress. This is an important part and so critical because of the added urgency caused by Long Covid, with millions of lives hanging in the balance, stuck between a stubborn rock and a very hard place. No pressure, but the stakes are very high.
 
Hilda Bastian said:
Firstly, I agree that the long period without a public report was a serious problem: I can't do more now than apologize for that, and am happy to discuss how that came to be - with all the pressures of the pandemic, much that needed to be re-negotiated, and the desire to still reach the same goal, things didn't go according to the original plan..
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Great that you are happy to discuss the delay and how it came to be. Perhaps you can say what the original plan was, what had to be re-negotiated, why and with whom, and why there was a desire to still reach the same goal? From what I gather, the desired goal is to write a new exercise review come what may, and that is not negotiable. What will a new Cochrane review add to what NICE have just done in their review for the new ME/CFS guideline? A strength of the NICE process is that it looks at all the evidence for interventions for one (hopefully) clearly defined patient group rather than one intervention at a time for a less clearly defined patient group, a patient group which may well be defined differently by different review teams looking at one intervention on its own. With NICE, there is also a clear distinction between the people who do the technical review and quality assessment of the evidence within a strict scope set (with the input of patients), and the committee (also including patients) who write the guideline. The reviewers have no vested interests in, opinions about, or experience of any of the interventions, as this is not necessary to identify the outcomes measured, or evaluate the quality of the research methods used.
 
Mithriel said:
It is vital that severe ME is taken into account. The 25% group (not represented) found that many of their members had not been severe until they had been forced to exercise, does the whole panel understand this?
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The constant framing of ME/CFS around the issue of exercise harms us all. Severe patients - and there are so many of us - are also completely erased. It is very sad and frustrating.

Exercise harms ME/CFS patients, and has left many more disabled than they were before. Aside from that it is not relevant, because it is not a treatment for ME/CFS. The literature, despite using case definitions that fail to capture core features of the illness (PEM) and the efforts of a small group of researchers, has not shown that exercise is particularly relevant to the management of ME/CFS. A causal relationship between any patient improvement and structured exercise programmes has not been established. I hope that one of the conclusions of all of this is that we need to stop framing this whole issue around exercise once and for all.

It is politically inconvenient that there are conditions that are made worse by exercise, and that the infrastructure of "rehab" and "structured" programmes is not suitable for some patients and conditions. But it is the truth.

Overcoming this hurdle can free up much-needed time and resources which can be spent on furthering the understanding of ME/CFS both in a research and clinical context. The sooner healthcare practitioners can learn this truth, the better. It just goes to the basic understanding of what ME/CFS is. Once one understands the core features of the condition, one can understand severe patients without a lot of extra learning. PEM and sensory sensitivities can become very severe, for example. It is not a difficult concept. There must be training to counteract decades of misunderstanding and misinformation - this will be rife in any framing of ME/CFS that centres exercise as anything other than a potential severe harm.
 
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