George Monbiot on ME/CFS, PACE, BPS and Long Covid

[Trish]

We should certainly send the article to Cochrane.

I don't know. Monbiot raises no evidence that Cochrane do not have in front of them. He mentions David Tuller so will be seen as part of the activist conspiracy.

"But the story spread so widely by the media – that ME/CFS patients were irrationally refusing treatment and abusing those who offered it – stuck, in the NHS and beyond. Medicine gave way to groupthink.

"Here are some things that should not need stating. Scientists and those who champion them should never close ranks against empirical challenge and criticism. They should not deny requests for data, should not shore up disproven claims, should not circle the wagons against legitimate public challenge. Above all, those who suffer the most should be listened to the most."

This is the aspect I want Hilda and the Cochrane editors to take notice of. They are, as far as we know, refusing to reopen their earlier decision not to withdraw the Cochrane exercise review, and Hilda has said campaigning won't shift them. I think this public rebuke against ignoring legitimate public challenge to bad science is worth passing on to Hilda and to Cochrane editors. Of course it will make no difference, but I want them publicly rebuked.

 

[Blueskytoo]

…but I want them publicly rebuked.

Me too.

 

[Jonathan Edwards]

But until the data were released, there was zero traction. We all knew it was shit. But you needed the data to prove it to those who were not able or willing to see the obvious.

But I don't think that is actually true David. I submitted my testimony to NICE without any reference to the data revelations. NICE put PACE through its assessment system without any reference to data revelations. It decided the evidence was of too poor quality to recommend CBT and GET purely on the original manuscript and that is what has changed things. I am not denying the added value of understanding just how disingenuous the authors must have been and how important that is to a clear perspective for us, but I don't think historically it made a difference to where we are now.

 

[MSEsperanza]

The PACE paper itself tells us that there is no reason to think there is any such suggestion because the trial was self-fulfilling.

Yes. I'm just afraid "we" are still a minority who see this as it is. Thanks to a lot of work done by many people with and without ME/CFS, including you and other forum members, also maybe thanks to the appearance of Long Covid, the PACE trial and related claims now have lost credibility in the field of ME/CFS and LC, even if the majority of doctors still seem unimpressed.

But how many people have actually understood the essential critique?

The same trial design that PACE used -- non-blinded & reliance on subjective outcomes alone -- is still widely used for therapist-delivered treatments and recommendations based on it.

It seems to me the main reason why PACE & related claims have become unpopular is due to other reasons. I also think to build on the success achieved with the new NICE guideline and better media coverage, it's necessary to have a genuine discussion on the trial design issue with people in charge.

 

[Jonathan Edwards]

I think this public rebuke against ignoring legitimate public challenge to bad science is worth passing on to Hilda and to Cochrane editors. Of course it will make no difference, but I want them publicly rebuked.

But if we send them a copy that won't be public, will it?
Cochrane see their analysis of exercise as something quite separate from the SMC politics. Their analysis derives from GP politics wanting to throw stones at big Pharma and hospital medicine and make everything primary care and exercise. Monbiot doesn't actually produce any arguments. He appeals to various people's opinions but Cochrane have heard what all those people think and disagree with them.

 

[Sasha]

But if we send them a copy that won't be public, will it?

How about if we send it and issue a press release about it, and ask George Monbiot and David Tuller to cover that story?

 

[Jonathan Edwards]

But how many people have actually understood the essential critique?

It seems to me the main reason why PACE & related claims have become unpopular is due to other reasons.

Pretty much every trainee that I have worked with understands the essential critique. It is, after all, the reason why we spend millions on properly controlled trials that avoid bias. But those same trainees will then forget they understand this and make the same mistake. It isn't really an issue of understanding. It is an issue of human motivation taking precedence over reasoning. The problem is as old as humanity and all one can do is to try to mitigate it by minimising ulterior motivation in things like health care and education.

PACE has always been unpopular for other reasons but the only legitimate objection is that its results are meaningless. In fact PACE is a very useful trial because it provides strong negative evidence but that is another issue.

What concerns me most here is that we do not get sidetracked into these 'other reasons' in ways that contribute to deaths. One of the many steps that led to Maeve's death was, I believe, a refusal to see that if she had been deemed not to have full mental capacity, however untrue that might have been, she would probably be alive today. Constantly railing against the psychiatric label may be making things worse.

 

[Trish]

But if we send them a copy that won't be public, will it?

It will if we post a copy on the forum. But I don't want to divert this thread further with Cochrane discussion that's better done on another thread.

 

[Jonathan Edwards]

How about if we send it and issue a press release about it, and ask George Monbiot and David Tuller to cover that story?

Who is the audience though? Everyone involved has made up their mind one way or another. The public aren't going to see much of a story in patients telling Cochrane that Monbiot has told them off for reasons they know about.

 

[dave30th]

The access to the data revealed just how much manipulation had gone on, which means that the any benefit of the doubt for the authors is rescinded.

Exactly. That is the same thing as saying it made a big difference in proving the case to other people.

 

[MSEsperanza]

What concerns me most here is that we do not get sidetracked into these 'other reasons' in ways that contribute to deaths.

Agree -- some of these other reasons might have helped short-term in getting awareness on the either bad or non-existent care for pwME/CFS and very poor research on their illness. Long-term what's needed is better research and pragmatic care until we have treatments.

It isn't really an issue of understanding. It is an issue of human motivation taking precedence over reasoning. The problem is as old as humanity and all one can do is to try to mitigate it by minimising ulterior motivation in things like health care and education.

I see that it may more often be a problem of motivation and denial. Or a problem of transferal -- transferring knowledge from fields in which people feel comfortable (disease with somehow 'understandable' symptoms and signs) to fields that challenge their understanding (symptoms and patterns that don't fit in any of the learned categories, even in otherwise 'acknowledged' disease, e.g. fatigue in cancer.).

I doubt though that's always the case and that there can't be done more about it. I'm also reminded of the NICE guideline on 'Primary Pain'.

So what about all the Cochrane, GRADE, IQWiG and other institutions where people don't seem to actually understand our critique?

See e.g. IQWiG's response:

"It is certainly desirable if endpoints that can be objectively recorded are also recorded in this way, because this generally increases the reliability and validity of the data collection (e.g. through blinding).

"Conversely, however, patient-reported endpoints, such as pain or quality of life, are of utmost importance for patients and thus also for the assessment of a benefit, although by their nature they can only be recorded subjectively.

"The fact that many symptoms can only be recorded subjectively is also not a disadvantage because ultimately only the patient can evaluate the success of his or her own treatment. If a person learns to rate his or her own symptoms as less severe or threatening, then this can be seen as a genuine relief, since here too it is the subjective patient perspective alone that counts. Overall, therefore, no need for change to the methods paper is seen on this point." (*)

What if they needed to genuinely listen and reply to all the essential critique that has been discussed on S4ME before they could go on with their work impacting on us and other sick people?


Edited the last paragraph to remove the "badly" before "impacting" -- because if they genuinely listened and replied, they should stop having a bad impact on our lives, of course.

 

[Sasha]

Who is the audience though? Everyone involved has made up their mind one way or another. The public aren't going to see much of a story in patients telling Cochrane that Monbiot has told them off for reasons they know about.

Aren't the implications of the story much bigger - that Cochrane isn't fit for purpose?

 

[Robert 1973]

Yes, it is. And I expect to do a follow-up interview with him about this one, hopefully next week.

Great! As George has a bigger audience than you, I’m wondering if you might suggest reversing the tables and asking if he would interview you – either as well as you interviewing him or instead. It’s a shame he doesn’t have a podcast but I’ve seen him doing videos before.

I also noticed on Xitter that Jennie Jacques is doing a “journalist sandwich” with you and George.

https://twitter.com/user/status/1846557653679370529

 

[Jonathan Edwards]

Exactly. That is the same thing as saying it made a big difference in proving the case to other people.

But to be devil's advocate - who else was persuaded by this?
Everyone sensible in the ME/CFS world already thought PACE was rubbish.
Everyone dumb still thinks as they did before as far as I can see.

There has been a shift in media coverage following NICE 2021 and a lot of advocacy but I don't see the revelations about re-defining recovery or bad statistics making any real difference to that. The media either follow one authority or another and often present both to pretend that they are being fair.

Knowing about the manipulation is of value to those of us who are interested in critiquing each bit of science as it comes out from the best perspective but I doubt it makes any difference to the wider audience.

 

[Jonathan Edwards]

So what about all the Cochrane, GRADE, IQWiG and other institutions where people don't seem to actually understand our critique?

These people understand the arguments perfectly well but allow their motivations to override their reasoning. Maybe this is a different sort of lack of understanding. I get the impression that quite a lot of people can understand a concept but do not 'understand' in a different sense meaning that they are unable to rehearse the practical implications in their minds in such a way as to use the concept consistently and reliably.

The IQWiG's response is simple non-sequitur. They should see that but they never will. I don't actually think you can make any impact on people who cannot 'understand' in this operational sense. I have never managed to do so.

 

[Jonathan Edwards]

Aren't the implications of the story much bigger - that Cochrane isn't fit for purpose?

Cochrane is not fit for purpose but the reasons behind that, as I indicated, are to do with a completely different political story than the one Monbiot addresses. They are to do with territoriality within the medical profession. A Monbiot article on that might be very good but it is not something George has been known to follow over the years, in the way that he has for the revolutionary communist party.

 

[dave30th]

There has been a shift in media coverage following NICE 2021 and a lot of advocacy but I don't see the revelations about re-defining recovery or bad statistics making any real difference to that.

I think it's rather unlikely that NICE 2021 would have happened without the added pressure and public dissemination of the information that the trial, by their own standards, had null results. After all, it required a lot of pushing to get NICE to reverse its initial position in 2017 not to review the guidelines. Part of that pushing involved pointing out that by their own measures, their gold standard study had null results, or practically null results.

 

[MSEsperanza]

Sorry, have been writing this while new replies were posted -- so won't be able to reply but just add my last post on the 'essential' critique of the BPS research on ME/CFS.

I remember that even if the essential critique on the BPSers favorite trial design (non-blinded trials with subjective outcomes as only primary endpoints) was shared and understood on S4ME, it was much more difficult to get an understanding of how to set up a proper trial assessing therapist-delivered treatments for illness/ symptoms without an established biomarker.

There was some discussion on establishing a composite outcome measure, but the conclusion if I remember correctly was something like "eventually it depends on what you want to investigate". Which may be true, but looking for other examples, I think we didn't find any that were convincing either.

So maybe that unanswered question -- "How is it possible to use a robust methodology with these conditions?" -- contributed to the difficulties with 'true' understanding of the critique?

Edit: Plus, outside the field of ME/CFS, it's also patient organizations that say subjective outcomes matter most, irrespective of the question whether the treatment can be blinded.

I still think it's relevant as people will go on to investigate therapist-delivered treatments for ME/CFS and LC with the same poor trial design but with a better defined patient population (updated diagnostic criteria) -- and as long as potential harm is not properly assessed, plus...

My wife commented that NICE saying the quality was low or very low does not exclude it being at least suggestive that there might be a positive result.

... so exercise / rehabilitation/ CBT could easily come back as treatment recommendations in a few years.

 

[boolybooly]

Regarding George Monbiot's article, this latest one really paints a picture and redeems The Guardian a little in my eyes, though question marks hang over previous coverage from The Guardian by other authors who previously swallowed and regurgitated the SMC's irrational garbage.

The revelations in the article about the origins of a key member of the SMC in the Revolutionary Communist Party (RCP) are extraordinary and eye opening and regarding the policies of the RCP, beyond the pale.

This origin explains much about the contrarian divisiveness we have seen deployed against PWME by the SMC and BPS proponents.

This then becomes very difficult to discuss on S4ME because such gambits have their origin and purpose in politics and the guidance for S4ME discussion is to avoid discussing politics in favour of adhering to scientific methodology and rationality lest the discussion become too heated and get out of hand.

I think remaining rational and focussed on science in the face of such deliberate attempts to destabilise and derange the civil consensus, let alone the scientific process, is a strength and itself a winning counter-gambit which we should stick with.

I also think we need to take inspiration from this article to make sure the rest of the world understands what has been going on.

Assuming that everyone now understands ME/CFS because NICE have changed guidance would seem to be a mistake which is the very lesson Maeve's tragic and unnecessary death teaches us, about medical professionals continuing to incorrectly transfer attitudes derived from treating other conditions onto ME/CFS patients and having no 'concept' of what ME/CFS is. So I can see the point of discussion elsewhere about that. A fair concept of ME/CFS is something we need to promote to clinicians despite the opposition of reason by the contrarian harpies of the SMC.

The point that Maeve should at least have been sectioned before being allowed to die, I imagine would carry weight even with those as ignorant as the doctors who negligently allowed her to die and might serve as a way to break the ice in a dialogue with medics who still insist on burying their heads in the sand regarding the distinct nature of ME.

 

[bobbler]

I disagree with this. It might not have mattered to theoretically decide the article was crap--as all the patients did, as well as you, me, and my colleagues at Berkeley and everyone who signed my letters. But until the data were released, there was zero traction. We all knew it was shit. But you needed the data to prove it to those who were not able or willing to see the obvious. I think it's important not only to know the design sucked, but that their original results were essentially null. Whether the trial sucked, and what the results should have been, are two related but separate issues--and each one was vital to furthering the argument.

Agree.

most people are not interested in statistics and switch off when you start having to talk about these things like ‘technically broke a rule’ as even those who sort of can grasp some sort of maths or science really have to get this area to talk on those methods terms and get the impact

until you can model it through to show how eg using the wrong choice of instrument for non-parametric data (and picking on fir parametric) makes the ‘stat’ positive suddenly when it would be way off if using the valid tool. They don’t want to see descriptions of Mann-Whitney and how it works but can relate when they see the Avs B working through with numbers.

that on top of that there was stuff that to all looks like manipulation is really important in shifting the DARVO ‘we aren’t the bad guys, why aren’t you grateful’ lines.