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

Trish said:
Just to clarify, this is the first I have heard of this. Whatever Infinite Rubix is planning in the way of letters (or legal action?) is not a forum project, though of course any member is welcome to use the forum for ME advocacy communication. Perhaps, @InfiniteRubix, you could clarify what you are planning when you are ready. As I'm sure you know, open letters as part of ME advocacy can be posted here:
https://www.s4me.info/forums/open-letters-and-replies.100/


Thank you for reading our posts and doing your best to reply. I do understand that you may feel under constraints because you have been employed by Cochrane to carry out a specified role.
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Thanks! A point of clarification: I'm not employed by Cochrane and it wasn't out of concern for Cochrane. Nor are there constraints from Cochrane on my communication, other than obviously not claiming that I speak for the organization. I would not have accepted this role if it wasn't clear that there wouldn't be. I've been criticizing the Cochrane Collaboration even when it was being developed: after some 3 decades worth of public criticism from me, people know what to expect.
 
cassava7 said:
This may apply to the UK, however the Cochrane review has a significant impact abroad — especially in countries where no official clinical guidelines have been established for ME/CFS yet —. Clinicians, including physiotherapists, often bring up the current review to justify delivering (graded) exercise therapy to people with a diagnosis of CFS.
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That is a fair point. Although I also agree with those who see use of Cochrane as often a sticky label on an existing view.

I absolutely agree that a better group of authors would be desirable. Having a physio assessing whether a rag bag of exercise trials can justify employing a physio is like asking a Glaxo representative to assess a Glaxo drug or a homeopath to assess homeopathy trials - especially now that physio is sold commercially by people like Rhona Moss--Morris. But my assumption is that Hilda did not have carte blanche.

There is an irony that all this has come about because the same 'opening up to stakeholders' that involved patients in peer review is the justification for allowing physios to assess physio. The current political correctness does not seem to understand the difference between the interests of those paying for the service - yes customers - and those making a living out of it.

It may be worth comparing the current author list with the last, never published, version of this review, which included (if I remember rightly) Larun, Chalder, Sharpe, White and for some obscure reason Glasziou.
 
Hutan said:
This. The Cochrane reviews are a major obstacle to getting better guidelines in place around the world. A finding that GET is useful for ME/CFS would be a tremendous set-back. I feel uncomfortable gambling on that, for the sake of Cochrane sorting out its internal issues. Cochrane seems to have been fine with Paul Garner departing from evidence-based medicine by telling the world that his personal experience proves ME/CFS is a mind over matter issue. As far as I am aware, he is still the Cochrane Coordinating Editor of the Infectious Diseases Group - so I don't have much confidence in Cochrane management's ability to ensure good science is done.

We don't know how the IAG is going to work, but I've seen no evidence yet of processes that will allow members of that IAG to exert useful influence. Even if they can, you have the likes of Peter Gladwell in that group - so we are still relying on the review group to be sensible about how they use IAG input.

If you look at the latest CDC evidence review (which Mary Dimmock contributed to), you will see that she, on her own, can't ensure sensible outcomes (no one could). So we really need the systematic reviewers to be smart and unbiased. I don't know anything about them.

Review team
  • Consumers: Mary Dimmock (USA, carer, person with ME/CFS advocacy background), Kay Hallsworth (UK, person with ME/CFS);
  • Clinicians: Todd Davenport (USA, physiotherapy), Julia Newton (UK, medical);
  • Systematic reviewers with relevant methodological expertise: David Nunan (UK, experience with systematic reviews of exercise as an intervention); Argie-Angeliki Veroniki (Greece, statistician);
  • Systematic reviewers from Cochrane response: Hanna Bergman (Israel), Nicholas Henschke (Germany, lead author).
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OMG. David Nunan - "experience of systematic reviews with exercise as an intervention". This says it ALL! It's not about "exercise as an intervention" it's about people with ME. No one in Cochrane seems to know anything about ME. This is why the first review was done by the Mental Disorders Review Group. Wessely was the founding Editor of that group, although that fact seems to have been airbrushed out of history. It would be good to have a systematic reviewer who realises that relying on subjective outcomes in unblindable trials of ANY therapist delivered intervention is wrong. It's not a matter of opinion. Maybe Nunan does. How can this really be beyond them??
 
Sean said:
Good point.
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It's not obscure that Glasziou is an author of the never published IPD review as he was acknowledged for giving advice and information (alongside Peter D White) on the current and un-withdrawn Exercise review. It's a natural progression from giving advice and information to authorship of future reviews of the same intervention.
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Jonathan Edwards said:
That is a fair point. Although I also agree with those who see use of Cochrane as often a sticky label on an existing view.

I absolutely agree that a better group of authors would be desirable. Having a physio assessing whether a rag bag of exercise trials can justify employing a physio is like asking a Glaxo representative to assess a Glaxo drug or a homeopath to assess homeopathy trials - especially now that physio is sold commercially by people like Rhona Moss--Morris. But my assumption is that Hilda did not have carte blanche.

There is an irony that all this has come about because the same 'opening up to stakeholders' that involved patients in peer review is the justification for allowing physios to assess physio. The current political correctness does not seem to understand the difference between the interests of those paying for the service - yes customers - and those making a living out of it.

It may be worth comparing the current author list with the last, never published, version of this review, which included (if I remember rightly) Larun, Chalder, Sharpe, White and for some obscure reason Glasziou.
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Re "Glasziou" I assume that this is:
"Prof. Paul Glasziou
Director
Institute for Evidence-Based Healthcare
Faculty of Health Sciences & Medicine"
https://bond.edu.au/intl/profile/paul-glasziou

With such an impressive resume anyone would be happy to have them on their review panel.

I think you mentioned previously that, when you were working on rituximab in arthritis, you went to great lengths to make contact with the patient community. The succession of failures [PACE, NICE Guidelines --] highlights a systemic problem and yes informed patients/(informed) representatives of patients, seems like a necessary step to address those problems.
 
Jonathan Edwards said:
I absolutely agree that a better group of authors would be desirable. Having a physio assessing whether a rag bag of exercise trials can justify employing a physio is like asking a Glaxo representative to assess a Glaxo drug or a homeopath to assess homeopathy trials - especially now that physio is sold commercially by people like Rhona Moss--Morris. But my assumption is that Hilda did not have carte blanche.

There is an irony that all this has come about because the same 'opening up to stakeholders' that involved patients in peer review is the justification for allowing physios to assess physio. The current political correctness does not seem to understand the difference between the interests of those paying for the service - yes customers - and those making a living out of it.
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What comes across as most absurd is that Cochrane (and generally healthcare authorities in recent years) has implemented procedures to prevent financial conflicts of interests with the pharmaceutical industry, but conflicts of interests related to non-pharmacological interventions -- whether financial, academic or allegiance bias -- do not seem to bother anyone much.

The exception is complementary and alternative medicine (CAM), which is subjected to much scrutiny, but in fact, it only confirms the above bias. Orthodox* non-pharmacological interventions, such as exercise and accepted forms of psychotherapy, evade the same scrutiny when the context changes. While they are considered orthodox because they are proven to be widely beneficial in one or more context(s) (e.g. cardiovascular health for exercise), the quality of the evidence that backs them in a different context (chronic "medically unexplained" illnesses) can be just as poor as in CAM. Even when systematic reviews highlight this shortcoming, the widely applicable benefit of these interventions in their "orthodox" context shields them from too much criticism elsewhere, and they continue to be unduly recommended there.

It is certainly difficult to question practices from disciplines that are tightly integrated into healthcare systems and have long been so (e.g. physiotherapy) when they deliver interventions not justified by (the quality of) the evidence. This is especially true when doing so means coming back on one's footsteps and admitting mistakes, as well as resisting external pressure from eminent proponents of these interventions, as is being asked of Cochrane. However, Cochrane defines itself as an independent purveyor of medical evidence and has challenged many practices that seemed to be commonly accepted -- in the context of a "hot potato" of a "contested" illness, it has the potential to bring much needed clarification. It is only fair that it lives up to what it purports to be.

* The definition of CAM as coined by Edzard Ernst is: a “diagnosis, treatment and/or prevention which complements mainstream medicine by contributing to a common whole, by satisfying a demand not met by orthodoxy or by diversifying the conceptual frameworks of medicine.”
 
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@Hilda Bastian It would be helpful that in their biographies, every member of the author team and the IAG present their current biases on and past involvement in exercise therapy for CFS.

For example, we should know whether the clinicians have delivered exercise therapy for CFS and/or other chronic "medically unexplained" illnesses such as fibromyalgia, PoTS, IBS (given that the same methodological issues arise with their respective evidence bases).

Have the patients received exercise therapy for CFS? Did they find it helpful, where they harmed from it?

Are the statisticians aware of the methodological issues that have been reported, and have they worked on other systematic reviews of exercise or psychotherapy dealing with these issues? Were they taken into account if so?
 
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Caroline Struthers said:
It's not obscure that Glasziou is an author of the never published IPD review as he was acknowledged for giving advice and information (alongside Peter D White) on the current and un-withdrawn Exercise review.
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Yes but why was he acknowledged - what for? Why was he giving advice in this area or, as it says, providing 'additional information'. Why does Glasziou say we know exercise works - from clinical experience? Surely you only move from advisor to participant if you have some sort of finger in the pie?
 
So, these are the reviewers (again).
  • Consumers: Mary Dimmock (USA, carer, person with ME/CFS advocacy background), Kay Hallsworth (UK, person with ME/CFS);
  • Clinicians: Todd Davenport (USA, physiotherapy), Julia Newton (UK, medical);
  • Systematic reviewers with relevant methodological expertise: David Nunan (UK, experience with systematic reviews of exercise as an intervention); Argie-Angeliki Veroniki (Greece, statistician);
  • Systematic reviewers from Cochrane response: Hanna Bergman (Israel), Nicholas Henschke (Germany, lead author).
All of the systematic reviewers are part of the Cochrane network - there's no one who has been brought in from outside to bring some independence, to balance the potential conflict of interest all the Cochrane-associated reviewers have in not making Cochrane look bad and in not rocking the boat with other Cochrane subjective outcome+unblinded treatments reviews.

https://community.cochrane.org/orga...ile-reviews-pilot/cochrane-exercise-and#Three
Biography from the review site said:
Dr. Veroniki is a mathematician, holds an MSc in Statistics and Operations Research, and a PhD in Biostatistics and Epidemiology. She is a Research Fellow at the University of Ioannina in Greece, and an Affiliate Scientist at St. Michael's Hospital in Toronto, Canada. Her research focuses on the statistical modelling for evidence synthesis and the methodology of systematic reviews and (network) meta-analysis. She is a co-Convenor of the Cochrane Statistical Methods Group, acts as a Senior Editor for the Systematic Reviews and an Associate Editor for the Pilot and Feasibility Studies journal.
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https://esm.uoi.gr/en/argie-angeliki-veroniki/
Bio from Evidence Synthesis Institute website said:
...She is a co-Convenor of the Cochrane Statistical Methods Group and an Associate Editor for the BMC Systematic Reviews journal and the BMC Pilot and Feasibility Studies journal. She is a Statistical Editor for the Cochrane Depression, Anxiety and Neurosis Group, and the Cochrane Developmental, Psychosocial and Learning Problems Group.
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Jonathan Edwards said:
Yes but why was he acknowledged - what for? Why was he giving advice in this area or, as it says, providing 'additional information'. Why does Glasziou say we know exercise works - from clinical experience? Surely you only move from advisor to participant if you have some sort of finger in the pie?
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Well I could write and ask him. Hilda pointed out it was ambiguous what Paul Glasziou did and what Peter White did. So I could write and ask how he got involved in the review, and what he contributed.
 
I guess his vignette biography in the Lancet gives us some answers. I think we saw this before:

A general practitioner for many years, Glasziou is especially interested in non-drug research (and is helping to create the Handbook of Non-Drug Interventions), which, due to its lack of commercial interest (sic), is poorly represented in biomedical research. One of his pet subjects is exercise and physical activity. ... “But the evidence is still modest here, so we would definitely benefit from more trials in this area”. He is also sanguine enough to acknowledge that a pure evidence base for clinical practice or for informing public health is not always possible.

Glasziou, who is approaching his 60th birthday, is not looking ahead to retirement. “There is so much to fix, I won't be able to stop working”, he says. And there are surfing ambitions too. “It's my personal favourite non-drug treatment.”
 
Jonathan Edwards said:
Why does Glasziou say we know exercise works - from clinical experience?
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I'm curious of much he knows about ME/CFS. I wouldn't be surprised if a lot of the confidence in exercise that he and others with a peripheral interest in ME/CFS have comes from viewing ME/CFS and unexplained fatigue as essentially the same thing. That could lead to someone ignoring weak results and methodological problems in ME/CFS, with the reasoning that there are a lot of other studies in populations with unexplained fatigue that are good enough (that are formally excluded but "obviously" relevant).

If this is the scenario then it may be possible to find common ground.
 
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strategist said:
with the reasoning that there are a lot of other studies in populations with unexplained fatigue that are good enough (that are formally excluded but "obviously" relevant).
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I don't think there are any good studies in that group either. I suspect he is referring to himself - being an exercise junkie.

I rather suspect that like Garner he thinks n=1 is low quality evidence but
n=me is top whack incontrovertible stuff.
 
Hutan said:
So, these are the reviewers (again).
  • Consumers: Mary Dimmock (USA, carer, person with ME/CFS advocacy background), Kay Hallsworth (UK, person with ME/CFS);
  • Clinicians: Todd Davenport (USA, physiotherapy), Julia Newton (UK, medical);
  • Systematic reviewers with relevant methodological expertise: David Nunan (UK, experience with systematic reviews of exercise as an intervention); Argie-Angeliki Veroniki (Greece, statistician);
  • Systematic reviewers from Cochrane response: Hanna Bergman (Israel), Nicholas Henschke (Germany, lead author).
All of the systematic reviewers are part of the Cochrane network - there's no one who has been brought in from outside to bring some independence, to balance the potential conflict of interest all the Cochrane-associated reviewers have in not making Cochrane look bad and in not rocking the boat with other Cochrane subjective outcome+unblinded treatments reviews.

https://community.cochrane.org/orga...ile-reviews-pilot/cochrane-exercise-and#Three


https://esm.uoi.gr/en/argie-angeliki-veroniki/
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Hanna Bergman was directly employed by Karla Soares-Weiser when she was the director of Enhance Reviews Ltd, until the company was dissolved in late 2018:

Hanna Bergman worked for Enhance Reviews Ltd. during preparation of this review and was paid for her contribution to this review. Enhance Reviews Ltd. is a private company that performs systematic reviews of literature. Hanna works for Cochrane Response, an evidence consultancy operated by Cochrane.

Karla Soares‐Weiser was the director of Enhance Reviews Ltd. during preparation of this review. Enhance Reviews Ltd. is a private company that performs systematic reviews of literature. Karla is employed by Cochrane as Deputy Editor in Chief.​

Unfortunately, as deputy EiC, Soares-Weiser has not been very adamant in responding to @Caroline Struthers' requests about the reviews on exercise therapy and CBT for CFS.

However, at least one review led by Bergman has highlighted high risk of performance bias in a non-blinded behavioral intervention with subjective outcomes: Client feedback in psychological therapy for children and adolescents with mental health problems (2018).
 
Excuse me for not keeping up here but if there is a "review of Cochrane" and it's carried out by the faithful/buddies ---- then what is the risk? Surely a body like NICE should have people capable of evaluating a clinical trial and e.g. if it is unblinded, and uses subjective outcomes, then label it as poor quality evidence --- tells us nothing.

I'm wondering if the target shouldn't be Cochrane but the users - of course the members here have indeed challenged NICE --- maybe that is an alternative strategy i.e. challenge the review and challenge anyone (acting on behalf of the public) who uses flawed assessments.
 
cassava7 said:
However, at least one review led by Bergman has highlighted high risk of performance bias in a non-blinded behavioral intervention with subjective outcomes: Client feedback in psychological therapy for children and adolescents with mental health problems (2018).
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Yaay, I'm so glad that you found that study @cassava7. So this is about children and young people reporting on treatment acceptability and whether their symptoms improved. It pretty much eliminates Crawley's modus operandi. Maybe Bergman will be good.


We are very uncertain about the effect of client feedback on improvement of symptoms, as reported by youth in the short term because we considered evidence to be of very low‐certainty due to high risk of bias and very serious inconsistency in the effect estimates from the different studies. Similarly, we are very uncertain about the effect of client feedback on treatment acceptability, due to high risk of bias, imprecision in the results, and indirectness of measuring the outcome (RR 1.08, 95% CI 0.73 to 1.61; 2 studies, 237 participants; very low‐certainty).

Overall, most studies reported and carried out randomisation and allocation concealment adequately. None of the studies were blinded or attempted to blind participants and personnel and were at high risk of performance bias, and only one study had blind outcome assessors. All of the studies were at high or unclear risk of attrition bias mainly due to poor, non‐transparent reporting of participants' flow through the studies.
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Authors' conclusions
Due to the paucity of high‐quality data and considerable inconsistency in results from different studies, there is currently insufficient evidence to reach any firm conclusions regarding the role of client feedback in psychological therapies for children and adolescents with mental health problems, and further research on this important topic is needed.

Future studies should avoid risks of performance, detection and attrition biases, as seen in the studies included in this review. Studies from countries other than the USA are needed, as well as studies including children younger than 10 years.
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