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

This webinar may be of interest. https://lshtm.zoom.us/meeting/register/tJMkdO6pqTooEtT7rIDl4eGuNcjlrZqZ1cnp. I have attached the full programme.

It is organised by Cochrane Editor Ian Roberts who I have tried to get interested in a more general campaign to highlight the problem of bias in trials, especially of non-drug interventions run by developers of those interventions. This bias is then compounded in favour of these interventions within the review teams, who have links with (and even given authorship status to) investigators of included studies. I think I have mentioned the Exercise review as an example, but maybe I kept it very general. I can't remember now. He has been very forthright about how poor trials affect the results of systematic reviews in his own area, but has not responded to me. His own stance on this has been an inspiration to me and I mentioned him (beginning of page 2) in the attached proposal made to Cochrane in 2018.

This webinar is concentrating on fraud, and that fact that their group has published reviews where none of included studies even existed! I don't know if the issue of the exercise review will be considered serious enough in this webinar considering he has shown no interest in the problems with the Exercise review so far. But I will go along anyway.
 

Attachments

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Trish said:
Thanks @Caroline Struthers. I found the 'EQUATOR-Cochrane partnership proposal Turning the (risk of bias) tables green' that you attached above very interesting. Has any progress been made on it?
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No. I tried again in December (encouraged by someone outside Cochrane who liked the idea) and the response was a fob off - see below. This other person followed up again early this year, and got another no. Not entirely surprising. I did make it clear I would not be working on it personally as I am full time on a different project until 2022. It would be my colleagues at UK EQUATOR who would be involved in taking it forward if Cochrane wanted to.

Dear Caroline,

I passed on your proposal to the Editor in Chief and Deputy Editor in Chief, since it relates to Cochrane Library content.

While they definitely see it as a worthwhile initiative, this is not something we would be able to deliver on at the moment. Unfortunately, the COVID-19 work has seen the editorial team stretched further than usual, and workplans are being set for next year with that in mind.

I am sorry it is not more positive news at the moment. I wonder if we could keep in touch and come back to this at some point in the future?

With best wishes,

Emma Thompson
Advocacy and Partnership Officer
Chief Executive’s Office
Cochrane Central Executive
 
#MEAction Cochrane Redux by Jaime S

Quote:

Without a mix of people with different backgrounds and views, the review could never be taken seriously by those institutions that need change. There’s no echo chamber here. In order to see movement, the results will need to be plausible in the eyes of a variety of audiences, and that requires a plurality reaching eventual consensus. That will likely mean compromises that displease people on both sides.
Bastian’s coordination and mediation experience will be put to the test!
 
Kalliope said:
#MEAction Cochrane Redux by Jaime S

Quote:

Without a mix of people with different backgrounds and views, the review could never be taken seriously by those institutions that need change. There’s no echo chamber here. In order to see movement, the results will need to be plausible in the eyes of a variety of audiences, and that requires a plurality reaching eventual consensus. That will likely mean compromises that displease people on both sides.
Bastian’s coordination and mediation experience will be put to the test!
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I really don't understand this quote, nor this earlier one:
The battle lines are drawn, with patients and biomedical researchers in one camp and psychiatrists in the other.
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Why go on presenting it as a matter of two differing opinions and the need to reach a compromise.

It should never have been about that - if it is to have any scientific credibility it needs to be solely about good science. And that means digging into all the failings of the trials involved, not just taking numbers at face value.
 
Trish said:
Why go on presenting it as a matter of two differing opinions and the need to reach a compromise.

It should never have been about that - if it is to have any scientific credibility it needs to be solely about good science. And that means digging into all the failings of the trials involved, not just taking numbers at face value.
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I could not agree more.

@Hilda Bastian, @Medfeb,
@Michiel Tack's analysis of the Cochrane's MetaBLIND study is important reading for everyone involved in the ME/CFS Exercise Therapy review. Cochrane has had an institutional blindspot when it comes to bias due to lack of blinding. Anyone who does not understand that an unblinded study of a treatment requires a concerted effort to prevent a level of bias that makes the study useless (an effort that typically requires the use of highly objective and relevant outcomes, and care in the choice of an appropriate control treatment) should have no place in the review.
Bias due to a lack of blinding: a discussion

Suggesting that it's ok to have a plurality of views on the subjective outcomes/unblinded study issue* is like saying that a review team looking at how an ecosystem will adapt to climate change should have half of the team believing in intelligent design - it's that fundamental.

* I'm not suggesting that Jaime is saying that btw - I'm sure that she too wants everybody on the review team to have a basic level of scientific literacy.
 
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Trish said:
Why go on presenting it as a matter of two differing opinions and the need to reach a compromise.

It should never have been about that - if it is to have any scientific credibility it needs to be solely about good science. And that means digging into all the failings of the trials involved, not just taking numbers at face value.
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Yep. If this ends up being a political compromise just to keep the psychosocial school from throwing another tantrum and walking out, it will fail dismally, and it will be patients who pay the price. Again.

How do you compromise with people who want to ditch control, falsification, randomisation, and adequate safety reporting, etc? You know, the basic rules of good and safe science.

This problem doesn't go away until it is fixed properly, and weakening methodology will not fix it.
 
I think I am right in saying that this whole business has nothing to do with psychiatrists. That seems a complete misunderstanding of the battle. There are no psychiatrists as authors or on IAG are there?

The battle is with people in Cochrane with a bias towards low tech treatments based in primary care and with methodologists who want to manipulate evidence assessment to protect those treatments using half-baked systems like GRADE. It is also with physios who want to protect their jobs.

Nor do biomedical researchers have any thing to do with it. The assessment of physio is nothing to do with whether or not there is any research about anything else. And there aren't really any biomedical researchers on the team.

But it has absolutely nothing to do with biomedical/psychiatric.
 
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Trish said:
I really don't understand this quote, nor this earlier one:


Why go on presenting it as a matter of two differing opinions and the need to reach a compromise.

It should never have been about that - if it is to have any scientific credibility it needs to be solely about good science. And that means digging into all the failings of the trials involved, not just taking numbers at face value.
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Absolutely.

I'm reminded of this quote:

http://margaretwilliams.me/2014/points-for-david-tuller.pdf

"The Wessely School repeatedly uses a well-thought-out strategy: first they actively ignore the extant biomedical evidence base, failing to reference it in their papers and websites, leading people to believe it does not exist. Then they diligently promote the notion that the biomedical model of ME/CFS is merely a “view” or a “belief” held by a few misguided clinicians, patients and activists, yet the existence of ME as a neuroimmune disease is not a “view” or a “belief” but a fact.

A “view” is a belief firmly held but with no proof of its truth, whereas a fact is a concept whose truth can be proved. By referring to the biomedical model as simply a “view”, they instantly downgrade its validity in public perception. This “view” or “belief” held by patients is further degraded to a symptom of the disorder, the more strongly the view is held being “proof” of the need for “cognitive restructuring” to change these “aberrant illness 2 beliefs” (the Wessely School advise that there is no need for any biomedical testing, as this would increase the wrong illness beliefs).

At the same time, aided by the lazy and unquestioning media, they promote as fact the psychosocial model, when in reality it is nothing more than their own “view”, a view which is invalidated by the scientific evidence. Undaunted, they disseminate the impression that there are these two divergent points of view..."
 
Jonathan Edwards said:
But it has absolutely nothing to do with biomedical/psychiatric.
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In and of itself, no.

However, in the bigger context of healthcare the ones who seem to be pushing hardest for low tech treatments and also driving down the skillsets needed to deliver those treatments are either psychologists or psychiatrists.

They also seem very invested in those half baked systems that measure ill defined things in an inaccurate way. Then create a lot of noise about whether the tool has been used correctly or not as a distraction.

I can see why some feel that playing the political game might work but it doesn't. It certainly hasn't in the last 2 decades or more of appeasement that's gone on in the UK.

Cochrane either allows itself to be influenced by politics - and thus accepts it has a reputation for bias - or, it just looks at the evidence in a purely scientific way, regardless of who presented which paper.

Arguing for the plurality of views etc makes it seem we want representatives that are on our "side". We neither want nor need that & if we don't have that then others with a vested interest shouldn't be allowed it either.

We need people capable of understanding the methodological flaws and problems with risk of bias. The politics should be irrelevant.
 
Daisymay said:
I'm reminded of this quote:

http://margaretwilliams.me/2014/points-for-david-tuller.pdf

"The Wessely School repeatedly uses a well-thought-out strategy: first they actively ignore the extant biomedical evidence base, failing to reference it in their papers and websites, leading people to believe it does not exist. Then they diligently promote the notion that the biomedical model of ME/CFS is merely a “view” or a “belief” held by a few misguided clinicians, patients and activists, yet the existence of ME as a neuroimmune disease is not a “view” or a “belief” but a fact.
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I'm afraid that this could be an argument that actually doesn't apply.

I think mis- / over-interpretation of the evidence base derived from biomedical research made it and continues to make it easy for the proponents of a BPS pathology model to dismiss some of the criticism they receive.

It seems to me that most of the biomedical evidence base consists of, on the one hand, findings that disprove certain hypotheses, and, on the other hand, findings that are encouraging for some other hypotheses. But the latter is still mainly an area of research of low quality as well as of non-consistent findings.

In the research history of ME, maybe to many people who had only a look at the claims being made about the biomedical evidence the line of arguing about dismsissing evidence that actually is still absent even let the BPS proponents appear more scientifically trustworthy than many of their critics?

There are discussions relating to that topic on other threads , see e.g. here , here (fully public)

and here (members only).

Edit: grammar.
 
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Invisible Woman said:
However, in the bigger context of healthcare the ones who seem to be pushing hardest for low tech treatments and also driving down the skillsets needed to deliver those treatments are either psychologists or psychiatrists...

Cochrane either allows itself to be influenced by politics - and thus accepts it has a reputation for bias - or, it just looks at the evidence in a purely scientific way, regardless of who presented which paper.
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My view on this has actually changed in a major way. The problem was never the psychiatrists. It was always the primary care physicians - who outnumber psychiatrists by about twenty to one I suspect. The psychiatrists simply found a way to sell bogus treatments to GPs. Cochrane was set up by GPs who did not like money being spent on high tech drugs. The same people who generated Cochrane were those who bought in to Wessely's sales pitch.

It is the primary care physicians who are in charge here. The psychologists are simply selling them stuff they like.

Cochrane is not influenced by politics from outside. It is influenced by its own agenda - to shift the budget to low tech primary care driven medicine. This is more Clare Gerada territory than it is Simon Wessely territory. And governments love the idea of low tech low cost.
 
MSEsperanza said:
I'm afraid that this could be an argument that actually doesn't apply.

I think mis- / over-interpretation of the evidence base derived from biomedical research made it and continues to make it easy for the proponents of a BPS pathology model to dismiss some of the criticism they receive.

It seems to me that most of the biomedical evidence base consists of, on the one hand, findings that disprove certain hypotheses, and, on the other hand, findings that are encouraging for some other hypotheses. But the latter is still mainly an area of research of low quality as well as of non-consistent findings.

In the research history of ME, maybe to many people who had only a look at the claims being made about the biomedical evidence the line of arguing about dismsissing evidence that actually is still absent even let the BPS proponents appear more scientifically trustworthy than many of its critics?

There are discussions relating to that topic on other threads , see e.g. here , here (fully public)

and here (members only).
Click to expand...

I see what you mean, but I think it misses the point that this is only possible to say because of the distortions and manipulations of the BPS. They have made it a competition instead of an investigation.

The biomedical research is looking at hypotheses but nothing gets anywhere because the BPS have a stranglehold on funds. Think about the promising work by Karl Morten that was not funded. When they confidently say that CBT and GET are the only treatments that have shown to help people with ME, they leave out that nothing else has been funded.

It would not matter how much evidence was found for biological anomalies in ME it would never be enough. If it was overwhelming, they would simply say that these people may have a biomedical disease, like MS etc, but their treatments will still work for any chronic fatigue they are experiencing.

The simple fact is that when the like's of White start finding methodological faults in biomedical research it shows he understands how to run a proper trial but chooses not to so he can get the results he wants.

The theory that virus or something happens then people get deconditioned and afraid of exercise could easily be tested if they really wanted to know the answer. One single person who has PEM and other symptoms of ME but can still do a five mile run - not uncommon in athletes who get ME, disproves all the BPS work but they have never looked into it. When they first began spouting their theory they were challenged to show that deconditioning was universal in ME but they simply stated it as a fact and have continued to do so. This is all the proof we need that they do not have the interests of patients in mind.

It is also proof of their contempt for patients that even if you believe the results of the PACE trial 40% showed no improvement and only 30% recovered. Think if a trial for cancer found this. Would they then stop all research to help the remaining 70% who were still ill?

What patient's say, what biomedical researchers do has no influence over the BPS. No amount of peer reviewed papers have stopped them claiming the PACE trial as effective.

As patients with ME have gained support they have simply moved on to new illnesses which do not know them like we do.

The faults in the research exist, the fact that they break guidelines meant to protect patients exist, the fact that they are published despite breaking the policies of journals exists. If a review does not see that they must answer why.

Biomedical research and anything the patients say has nothing to do with that.
 
Jonathan Edwards said:
My view on this has actually changed in a major way. The problem was never the psychiatrists. It was always the primary care physicians - who outnumber psychiatrists by about twenty to one I suspect. The psychiatrists simply found a way to sell bogus treatments to GPs.
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But it was precisely the problem of the choice of direction that treatment took by the psychiatrists that we are still dealing with. If the psychiatrists had decided that the best treatment for pwME was pacing and rest, then they could have set up clinics to teach patients pacing, and CBT based on a model of overcoming the patients' false beliefs that exercise would cure them.

Pacing is actually difficult to achieve for very many people because it often necessitates major life changes and care support, and support with coping with the stresses this places on the patient's social and emotional life.
They could have made themselves and their CBT chums just as busy and important if they had taken that route.
 
Jonathan Edwards said:
It is the primary care physicians who are in charge here. The psychologists are simply selling them stuff they like.
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Every effective seller knows how to package and market and deliver their product to maximise sales. People choose to do GET - do we blame them for their bad choices, or those who offer the therapy, or those who conduct sloppy trials that make it appear effective, or the people who do sloppy meta-analyses of the sloppy trials, or the GPs who recommend it? Or the insurance companies and governments who insist on it before financial aid is given. Or the science teachers and lecturers who did not give people the skills to properly evaluate things....

Jonathan Edwards said:
This is more Clare Gerada territory than it is Simon Wessely territory.
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I don't think it has to be just one or the other. Or even just both. The idea of ME/CFS as a psychosomatic illness worked well for quite a lot of groups with power. Plenty of blame to go around.
 
GPs in general believe what is promoted by the various medical colleges. The teaching and narrative produced by those colleges is all based on the psych approach.

I am sure GPS would have preferred it if there were promising treatments, as there might have been if the psychs had not had a stranglehold on research funding.
 
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I have some sympathy for GPs. They are caught in the crossfire between desperate patients they can do little for, and senior levels of the profession above them demanding they follow protocols that mistreat patients and make the situation worse.

Which doesn't excuse GPs when they take it out on patients.
 
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