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

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'?

 

Thanks Hilda.

 

Yes she knows of Wessely and likes his work as she was one of four people (including Wessely himself) who retweeted this Tweet
https://twitter.com/user/status/995680588765040641

 

The only iconoclasts in this story have so far been patients and a few professionals who dared to point out that CBT/GET research is junk science and not of any proven value.

 

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?

 

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.

 

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

*

[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.

 

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.

 

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?