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

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.

 

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.

 

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??

 

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.

 

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.

 

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.”

 

@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?

 

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?

 

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.”

 

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.

 

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.

 

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.

 

Julia Newton announced last year that she'd quit ME/CFS research (?)
https://www.s4me.info/threads/uk-al...-me-news-2020-onward.16996/page-3#post-245610

so it's a bit curious as to why she's taking this on.