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

Hilda Bastian said:
My brief, as I explain in the report, was explicitly to locate someone who was not from the activist community
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ironic as it was Robert Courtneys (a former member on this forum, sadly no longer alive) analysis/submissions that were key in this 'process' being instigated.

eta: it has just occured to me that a lot of patient groups are represented here, so are they all classified as 'activists'?
 
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I just want to reiterate what Trish said, as it may seem that I have been going after Kay rather doggedly today:
This is not personal. Kay seems like a nice person, one who has achieved much in her life and has done much of that while sick with ME/CFS. But I don't see those things alone as being enough to qualify to contribute to an ME/CFS exercise review. Maybe there is more.

I don't know Kay, I don't know what her views about ME/CFS are, what she knows and what she hopes to achieve by being part of the review. And, given she is the only person on the review team with ME/CFS and the review will affect how I and my son and millions more are treated, I want to know.

Further, we have very little information, but the snippets we do have are suggestive of associations with people who have been very damaging to people with ME/CFS. For that matter, Cochrane has been very damaging to people with ME/CFS to date. So, that is why I, and we, ask questions. Because we have been let down in the past, and because getting things right next time matters.
 
Just a little aside. I dislike the use of the term 'consumer' in this context when they mean patient or carer.

Given that there is nothing for me to 'consume' except a smorgasbord of junk food - GET, CBT, IAPT, ACT - it seems particularly galling that the purveyors of that junk food get to call me an activist consumer and debar me from a participation in review of said junk food, first by not inviting me to apply to be a reviewer, and then by precluding me on the grounds that I have dared to express a view that junk food makes me sicker (edit - and that I dare to question the validity of the research methods they used to claim that their brand of junk food will make me feel better, and will do me no harm).
 
Jonathan Edwards said:
The problem is not one of mutual distrust. The problem is that an inappropriate group of people have sold themselves as carers for people with ME and they should just accept that they have nothing to offer, at least on present evidence. They shouldn't even be there.
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Isn't the real issue here that Cochrane are one of those groups who have pushed 'evidence' which is of an insufficient standard. But its not just the inappropriate behaviour it is also those groups that are in a position of power and influence.
 
Jonathan Edwards said:
But surely, Hilda, the only way to deal with this is to be honest about the reality. As you know I have absolutely no competing interests here. I write papers on neurophysics and go birdwatching. I am intrigued by a situation with on one hand a group of patients making an intelligent critique of studies that fall way below anything even a medical student should think any good and on the other a group of dog-in-the-manger health care workers with vested interests in selling unproven and almost certainly (from PACE) useless therapies. If someone talks of ME activism they should be told to grow up. If the Cochrane hierarchy has not got beyond that it remains in tatters.

The problem is not one of mutual distrust. The problem is that an inappropriate group of people have sold themselves as carers for people with ME and they should just accept that they have nothing to offer, at least on present evidence. They shouldn't even be there.

The situation is anomalous because roles such as physiotherapist, rehabilitationist, liaison psychiatrist etc are all predicated on providing a particular modality of care - in this case inappropriate. For other roles like cardiologist, epidemiologist or nurse, the role is not tied to any specific care modality. Vested interest is uniquely problematic in the 'rehabilitation' context.

I actually think that the list of names to be involved is pretty good. But I can't help thinking that the only sensible answer to the problem of the useless exercise review was to admit that there is no evidence worth reviewing because none of the trials are adequately controlled and leave it at that.
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This. NICE have reviewed all the evidence for GET, CBT, etc and found it is of low or very low quality, so it can't be used to make recommendations. So why do we have to go through it all again with the Cochrane process? I know it's a different process, but why is it any better?
 
Caroline Struthers said:
This. NICE have reviewed all the evidence for GET, CBT, etc and found it is of low or very low quality, so it can't be used to make recommendations. So why do we have to go through it all again with the Cochrane process? I know it's a different process, but why is it any better?
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It feels like it really is about politics rather than Cochrane doing the right thing or even taking patients seriously. Their dismissal of patient critics of bad science as 'activists' is a key point in demonstrating they don't want to take patients seriously.

I would have thought it was a an exercise designed to cover themselves but if they really wanted to cover their backs they would have withdrawn the current review as it could be harmful and is so obviously nonsensical. I suspect it is more they want to be seen to be taking criticism seriously whilst still trying to control processes and the agenda with no concern for the quality of output. Its taken over a year to get to this point but a quick look at the material would have said its not up to a sufficient standard to make it worth doing a review (basically what NICE did).
 
Jonathan Edwards said:
If someone talks of ME activism they should be told to grow up. If the Cochrane hierarchy has not got beyond that it remains in tatters.

The problem is not one of mutual distrust. The problem is that an inappropriate group of people have sold themselves as carers for people with ME and they should just accept that they have nothing to offer, at least on present evidence. They shouldn't even be there.
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Hilda, that is what we need you to understand. I think Cochrane is using you to provide a veneer of real engagement over a pretty rotten process.


It's not a matter of selecting 'reasonable' people from all sides in order to find some sort of compromise.

Those who push curative CBT and GET and ideas that ME/CFS is caused by personalty flaws and childhood trauma have no credible evidence to support their ideas. They don't help, they sometimes harm and they certainly waste money, resources and the hope of people with ME/CFS. Those of us who say this are not irrational radical activists - we've just carefully looked at the research.

And it's bigger than ME/CFS. Until Cochrane really understands that subjective outcomes in unblinded trials generally don't produce results that can be relied on, it will continue to produce junk reviews and support poor science.



BTW
Caroline Struthers said:
Yes she knows of Wessely and likes his work as she was one of four people (including Wessely himself) who retweeted this Tweet
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Re Kay's tweet of the ADVANCE study - I didn't know what ADVANCE is
ADVANCE investigates the long-term physical and psycho-social outcomes of UK battlefield casualties.
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Hilda Bastian said:
As the report says, though, the criterion we had ultimately reached was around "ME/CFS community activism".
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I am baffled why you went along with this and found it in any way acceptable.

A thought experiment.

Suppose you were asked to suggest 'consumers' to be part of a Cochrane review of a series of studies that claimed a high sugar, low fat diet was helpful for weight reduction and prevention of development of diabetes in obese individuals, and that the researchers involved were part funded by the sugar industry and had reached influential positions in medicine.

And suppose there is a long standing review on Cochrane's books that concludes the high sugar diet is effective and doesn't cause harm.

And suppose some patients who had been prescribed that diet had gone on to both stay obese and develop diabetes decide to do something about the review and write cogent well reasoned scientific demolitions of the current review and campaign with letters, supported by prominent scientists who agree the review is based on shoddy research methods and should be withdrawn.

Would you really say it was reasonable of Cochrane to describe these concerned individuals who had been harmed by the diet, and had seen others harmed, and were concerned for the harm to stop, as activists and ineligible to participate in the new review.

Would you think it reasonable to go along with their insistence that one 'consumer' on the review be selected on the grounds that they had not spoken out about the incompetent research on which the current review was based?

If you do think that is reasonable, are you really on the side of patients?
 
Snow Leopard said:
I don't understand what you mean by this?

Even if the remaining position is filled with people who have been too ill to work (or hold prominent volunteer positions in various organisations!) since their childhood (such as myself), this is still not much representation.

One additional question: is the IAG considering any late applicants?
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I'm not going to discuss details of people's lives that they haven't discussed themselves publicly, so my answers aren't going to very satisfying, I'm afraid. Your original comment was about not having an impressive CV because of not having been able to have a career due to illness: if a person were appointed for whom that's true, they wouldn't be the only one. I agree it's not much representation, and I hope that if that leads to oversights in our work, that consultation will identify that.

Edit: oops - pressed post instead of the return key.

No, it's not too late.
 
Andy said:
An author team was established.
  • Clinicians: Todd Davenport (USA, physiotherapy), Julia Newton (UK, medical);
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Dr Julia Newton has been involved in at least three studies of very poor quality on ME/CFS and exercise [1-3] -- one of which Karl Morten's group at Oxford, who was involved, has rejected* -- and, in a predatory journal, she has supported a causal association between ME/CFS with childhood trauma based on rodent studies [4].

Given the concerns with the quality of these studies, which show a rather clear allegiance bias to exercise for ME/CFS and to the biopsychosocial theory of ME/CFS, it is reasonable that deem that Dr Newton's work on the review will not be impartial. What were the reasons for choosing her as part of the author team? @Hilda Bastian

*
***PLEASE SEE BELOW: Zalewski, P., Kujawski, S., Tudorowska, M., Morten, K., Tafil-Klawe, M., Klawe, J. J., Strong, J., Estévez-López, F., Murovska, M., Newton, J. L., & The European Network On Me/Cfs Euromene (2019). The Impact of a Structured Exercise Programme upon Cognitive Function in Chronic Fatigue Syndrome Patients. Brain Sciences, 10(1), 4. https://doi.org/10.3390/brainsci10010004

In view of transparency of our previous work, we have included this paper***. The Morten Group DOES NOT ENDORSE GET (graded exercise therapy). Please have a look at these resources demonstrating GET to be detrimental to patients with ME/CFS. The CDC has also removed its recommendations for GET and CBT (cognitive behavioural therapy) for ME/CFS from their website in 2017.

NB: The importance of studying Post Exertional Malaise (PEM) or the deleterious response to GET should not be underestimated. Although we are not advocating running new GET studies we will be publishing our results showing the impact of GET (essentially an inducer of PEM – the cardinal symptom of ME/CFS) on metabolic profiles and biological/clinical variables in ME/CFS. Our preliminary findings showed that there are no changes between the metabolic profiles of patients with ME/CFS post-GET and prior to GET. These preliminary results (Strong et al., 2019) have been presented at the 2019 MitOx Conference and the 2019 Oxford Metabolic Health Symposium. A working paper is in progress.
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[1] Kujawski S, Cossington J, Słomko J, Zawadka-Kunikowska M, Tafil-Klawe M, Klawe JJ, Buszko K, Jakovljevic DG, Kozakiewicz M, Morten KJ, Dawes H, Strong JWL, Murovska M, Van Oosterwijck J, Estevez-Lopez F, Newton JL, Hodges L, Zalewski P, On Behalf Of The European Network On Me/Cfs Euromene. Relationship between Cardiopulmonary, Mitochondrial and Autonomic Nervous System Function Improvement after an Individualised Activity Programme upon Chronic Fatigue Syndrome Patients. J Clin Med. 2021 Apr 6;10(7):1542. doi: 10.3390/jcm10071542. PMID: 33917586; PMCID: PMC8038762.

[2] Zalewski P, Kujawski S, Tudorowska M, Morten K, Tafil-Klawe M, Klawe JJ, Strong J, Estévez-López F, Murovska M, Newton JL, The European Network On Me/Cfs Euromene. The Impact of a Structured Exercise Programme upon Cognitive Function in Chronic Fatigue Syndrome Patients. Brain Sci. 2019 Dec 19;10(1):4. doi: 10.3390/brainsci10010004. PMID: 31861543; PMCID: PMC7017365.

[3] J.L. Newton, J. Pairman, K. Hallsworth, S. Moore, T. Plötz, M.I. Trenell, Physical activity intensity but not sedentary activity is reduced in chronic fatigue syndrome and is associated with autonomic regulation, QJM: An International Journal of Medicine, Volume 104, Issue 8, August 2011, Pages 681–687, https://doi.org/10.1093/qjmed/hcr029

[4] Tomas C, Newton J, Watson S. A review of hypothalamic-pituitary-adrenal axis function in chronic fatigue syndrome. ISRN Neurosci. 2013 Sep 30;2013:784520. doi: 10.1155/2013/784520. PMID: 24959566; PMCID: PMC4045534.
 
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Hilda Bastian said:
I'd like to make sure that people's disappointment with my decisions doesn't translate into dismissing the contributions of people who have worked very hard behind the scenes for years.
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If I may, this is one of the reasons for the weariness: everything significant about us happens behind scene and that has been a huge part of the problem. Things happening without us knowing has been the defining feature of this disaster. That makes it naturally difficult to appreciate anyone's work when we don't even know about it, especially when we know this is how institutions remain hostile to us, in part because of the claims of "harassment", almost all of which has been rightful and accurate criticism that was dismissed with prejudice, nothing to inspire confidence. To be completely fair here, we have been abused, disrespected and our very lives dismissed. That will naturally make anyone very suspicious, especially about hidden agendas.

I'm optimistic that the monthly updates will help that, but unless things are made publicly known about what happened before, there will be a natural assumption that they were bad for us. I even feel like quoting JFK here, so what the hell: "The very word "secrecy" is repugnant in a free and open society; and we are as a people inherently and historically opposed to secret societies, to secret oaths and to secret proceedings". Bit dramatic but the spirit is the same. We are tired of being lied to by people with no stakes in the matter. And I absolutely don't mean you, just to be clear, but Cochrane itself is definitely on the "do not trust under any circumstances and also verify everything" list.

My only hope is that moving forward this is what will be the biggest change. It would definitely change everything. It makes our attitude negative and that has sunk us many times, but then so would have ignoring the reasons why we are rightfully angry and deeply suspicious of anyone who doesn't have an open clear record.
 
Trish said:
Would you really say it was reasonable of Cochrane to describe these concerned individuals who had been harmed by the diet, and had seen others harmed, and were concerned for the harm to stop, as activists and ineligible to participate in the new review.
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We could take another example and if someone were to do a report on racism and said that they wanted one person who had campaigned against racism and one who hadn't - that wouldn't under normal circumstances be considered very dodgy.
 
Cochrane said:
What will the IAG do?
The IAG will advise the authors of the review. It is anticipated that the IAG will be:

  • Advising on the language used to describe ME/CFS;
  • Advising on key issues for revising the review’s current protocol;
  • Reviewing and providing an IAG response to the drafts of the protocol and review;
  • Suggesting peer reviewers;
  • Reviewing the revisions made by the author team following peer review;
  • Considering issues raised by peer reviewers, stakeholder groups, and other readers about the protocol, the process for updating the review, and the review.
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https://community.cochrane.org/orga...eholder-engagement-high-profile-reviews-pilot

Looking at this I was shocked. In the role of the IAG it seems to be slipped in that the idea of the review is to revise the current protocol which is clearly not fit for purpose. It relies on unblinded trials with subjective outcomes, inconsistent interventions and dodgy measurement scales (which do not support the stats done). I had thought that when Cochrane said they would have a new review that this would be a genuine new review with a rethink of the protocol - not a rehash of what is there with a few minor improvements. @Hilda Bastian can you comment on that?
 
It would also be dodgy if there was a committee set up to examine racism and none of the members were black. As other people have said any experts who do not believe that CFS is behavioural are called activists (not to mention terrorists and antiscience!)

Years ago a committee was set up to examine the issues and complaints that ME patients had about the direction of research. An "independent" committee was set up so no ME experts were on it, but that was acceptable. In th end it was filled with people who were associated with the usual suspects.

All the honesty and fairness have been on our side as it is so hard for outsiders to understand the sheer underhandedness of the BPS cabal.

Over and over down the years we have watched as anything that would help us has been subverted to the profit of people whose skill is deceit. I really, really hope it will be different with this review.

It has heartened me that outsiders have started to see through the sham in recent years but there has been very little change on the ground. The draft NICE guidelines are quite hopeful but a flood of papers has come out recently to fight back. The Cochrane reviews are held up as evidence of the quality of these sort of papers so it is vital to our interests that the review be true.

The simple fact is that exercise may help with chronic fatigue but ME has never been chronic fatigue, some of us have never had 6 months of fatigue at all, it is a problem with production off enough energy to live.
 
I also would like to share my thoughts on the new announcements.

First of all: I appreciate Hilda Bastian’s efforts to set this up and lead the independent advisory group as it probably a difficult position to be in. I think involving ME/CFS stakeholders and clinicians is a good idea that will genuinely help to make the review on exercise therapy better. I’m also glad to see some well-known advocates involved. I would like to thank them for contributing their time and energy to what is likely going to be a long and difficult process.

That said, the involvement of ME/CFS stakeholders has never been the main issue. What happened is that Cochrane published a flawed review and that a couple of severely ill ME/CFS patients submitted detailed comments, pointing flaws and asking for these to be corrected. If I recall correctly, none of the people who submitted a detailed critique stressed that patient advocates or organizations should be involved or represented. They simply pointed out flaws and asked for these to be corrected. So the whole initiative about correct representation (someone from Australia, Europe, and the US, a patient that needs to be a woman, etc.) is very much besides the issue. It's probably a good thing and it's likely going to be helpful but it was never the core issue in my view.

I’m disappointed the sole patient in the author group was chosen based on having a “non-ME/CFS-activist background”. I find this offensive to the hard work of ME/CFS patients who pointed out flaws with exercise trials and the Cochrane. Patients’ critique of the largest exercise trial (the PACE trial) has been confirmed by multiple experts and some patients published multiple papers and commentaries on exercise therapy in the scientific literature. By selecting the sole ME/CFS patient on the author team based on having a “non-ME/CFS-activist background” Cochrane signals that it doesn’t take this expertise of ME/CFS patients seriously. It gives the impression that ME/CFS patients can be part of the author team to share their personal experiences with exercise but not their views about trial methodology, risk of bias assessments, and the validity of outcome measurements.

Because the sole patient on the author team was selected for not having published anything critical about the exercise trials and the Cochrane review, chances are high that she will not know the details of these issues yet. I would like to spell out the implications of this decision. This patient will have to learn about the problems with Chalder Fatigue Scale, the details of the PACE trial manuals and protocol, the GRADE handbook, statistical meta-analysis, ME/CFS case definitions, minimal important differences, the numerous patient surveys about GET, and so forth in a relatively short period of time. For a ME/CFS patient – who by definition has a serious reduction in the ability to function – this is a very difficult task. If this patient shares the objections raised by people in the ME/CFS community, she will have the defend them against professors in evidence-based medicine and people who do Cochrane reviews for a living. This setup doesn’t give me confidence that the issues patients have raised will be dealt with adequately. In addition, if this patient makes a mistake or misinterpretation (which is only human if one hasn’t studied these issues for a long time) this would create a false impression that the objections by ME/CFS patients aren’t well-founded.

I’m glad that Mary Dimmock, a parent of a ME/CFS patient, has been invited to the author team as she is a knowledgeable advocate who I highly respect. But this does not take away the concerns I spelled out above. I don’t understand why none of the ME/CFS patients - whose critical comments prompted the amendment and update of the Cochrane review - were invited to become part of the author team. One would think that this is the most obvious solution to the problem, namely the methodological flaws in the review. I doubt that anyone within the ME/CFS community would have objected if say Tom Kindlon or Mark Vink would have been invited to become part of the author team. This begs the question why Hilda Bastian didn’t consider this option or if she did, who vetoed it.

I’m glad that there are a lot of competent people in the IAG but its remit remains unclear and, at the moment, it seems to be mostly advisory. Previously, knowledge patients could submit critical comments and these were dealt with by Cochrane editors and the authors of the review. That is how some of the issues with the review came to light. If the idea is now to process these comments by the IAG first, then this would create one extra intermediate step, one extra difficulty in getting one’s arguments heard by those who can correct the review.

Although the recent announcements certainly include positive news, it gives me the impression that Cochrane is more concerned about making everybody happy rather than getting it right. The current initiatives seem to focus more on involving representatives of the ME/CFS community in the process of writing the review rather than correcting some of the methodological flaws. What if after this whole undertaking to set up an IAG and find a representative, non-activist ME/CFS patient, the final review on GET still has some of the same methodological errors? Will knowledgeable patients have to resubmit their comments again? Will Cochrane respond: the ME/CFS community had their say, case closed?
 
Michiel Tack said:
If this patient shares the objections raised by people in the ME/CFS community, she will have the defend them against professors in evidence-based medicine and people who do Cochrane reviews for a living.
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Won't that disqualify her from being on the writing team as then she becomes an activist.
Michiel Tack said:
That is how some of the issues with the review came to light. If the idea is now to process these comments by the IAG first, then this would create one extra intermediate step, one extra difficulty in getting one’s arguments heard by those who can correct the review.
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I would have thought an open and transparent review of the protocol collecting comments from everyone would be a good approach - NICE can do that although it is a lot of work.
Michiel Tack said:
What if after this whole undertaking to set up an IAG and find a representative, non-activist ME/CFS patient, the final review on GET still has some of the same methodological errors? Will knowledgeable patients have to resubmit their comments again? Will Cochrane respond: the ME/CFS community had their say, case closed?
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They gave a non-response before and I don't believe Cochrane will change - they know the current review is flawed and potentially harmful but refuse to do anything about it. I suspect they will only really take these issues seriously when people start laughing at the name and saying Cochrane can't be trusted and hence not believing any review they issue.
 
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