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

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.
Foreseeability of the impact in real life of providing just enough to allow the terrible treatment‘because everyone claimed to be confused by the debate’ when there is no debate once you’ve got that update on all those papers being built on sand foundations of a paper that was properly debunked

I think this is where having shown the data was manipulated on top of terrible methods should have left Cochrane with no leg to stand on too

EDIT: and yes as a charity, and there are 'parent companies' or something aren't there with reputations (?) then foreseeability to those who sit either around a table or with an email in front of them deciding to reply in such a way that keeps it from said table that one day there might be rebukes/it all come out and such delaying and ostriching might well end up in their laps making things look far worse (cover up is worse than the crime type theme) is quite relevant I would think.

Isn't there something along these lines to do with the Charity Commission (reasonable expectation/foreseeability of reputational damage etc). It's a way of proving 'they know/knew' it wouldn't 'look good' (as well as being morally the wrong thing).
 
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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.
Do you think that the 'not fit for purpose' angle would be a good way to get out story covered, though, and if so, can you think of which other journalist would get attention for it in the UK? (Or maybe it's just not a goer.)
 
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.

It would be interesting to know the history but my impression is that the interactions between Charles Shepherd and the Forward ME people and Martin Baker of NICE that got the guideline review agreed were rather independent of patient advocates looking at the detail of data. I may be wrong. I had the strong impression that Charles was arguing much as the IOM had in 2015 that PA CE was no good because it did not study proper ME/CFS - which was apparent from the original paper. I am not sure that Charles would have known in what way the data release altered the case for NICE changing its mind - and as said, I am not sure it did.
 
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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.

I see that you have been a member since Nov 2017 @boolybooly. Maybe the discussions we had about all this with @Esther12 were before that - maybe even on PR. The history George M gives here is well documented and we made use of it to write letters to the SMC and Sense About Science and Colin Blakemore when certain prizes were awarded for standing up to angry patients. But it probably needed re-airing as these things get forgotten. I had a chapter on it in my book on PACE that I shelved and George M has that. But most of what I wrote came from George M or other sources he knows well originally.
 
Do you think that the 'not fit for purpose' angle would be a good way to get out story covered, though, and if so, can you think of which other journalist would get attention for it in the UK? (Or maybe it's just not a goer.)

Journalists tend to be little help in this area because they live by their emotions. Their job is to colour people's lives with stories. They tend not to be very good at arguing for a difficult reasoning path to the truth rather than 'let's do some exercise!! It must be good for us.' Even people like George M go by their hearts. The GPs are winning the political argument at present because everyone, and especially Guardian journalists, thinks are wonderful - kind attentive doctors not just boffins. The fact that the emphasis on GP, which is largely used as a way of preventing people getting to costly expert care, is responsible for tens of thousands of unnecessary deaths. Cochrane' support of exercise treatment is in a sense an aberration even for Cochrane. Cochrane was set up to assess evidence rigorously and it has allowed that to be done very well for decades. The basic idea of Cochrane, as stated, is fine. Getting such a omcplicaed message across in a daily newspaper is impossible.
 
I see that you have been a member since Nov 2017 @boolybooly. Maybe the discussions we had about all this with @Esther12 were before that - maybe even on PR. The history George M gives here is well documented and we made use of it to write letters to the SMC and Sense About Science and Colin Blakemore when certain prizes were awarded for standing up to angry patients. But it probably needed re-airing as these things get forgotten. I had a chapter on it in my book on PACE that I shelved and George M has that. But most of what I wrote came from George M or other sources he knows well originally.

I see, thankyou for your representations. I am out of it a lot of the time anyway. 2016-17 for sure all my functional time was completely occupied drafting a quasi legal appeal regarding my PIP assessment to an HMCTS tribunal, which I won on the papers thankfully but unfortunately it took a toll. I could not focus on anything else at all.

I would have remembered this, which was news to me and shocking sensational news at that.

George said:
The Revolutionary Communist party (RCP) was one of many leftist groupuscules to emerge in the 1970s. But it distinguished itself with a cruel and brutal libertarianism. It campaigned against bans on tobacco advertising, child sexual abuse images, landmines and the ownership of handguns. It claimed that animals have no rights, that global heating is a good thing, that environmentalists are like Nazis. It attacked strikers and gay rights campaigners. By taking extreme rightwing positions while calling itself left, it wrongfooted almost everyone.

This is important context which I think demonstrates the irresponsibility of those incorrectly stereotyping PWME and when introduced at the right juncture, as it was in George's article, it adds significantly to the big picture. Well worth re-airing I would say!
 
Not sure how much I can say because the article is quite political but I really enjoyed reading it. Thanks to George.

Also my father was a fan of Monbiot before I even got ME, and I think Monbiot writing these articles is making my dad more interested in the activism side of ME/CfS which is wonderful.
 
I see that you have been a member since Nov 2017 @boolybooly. Maybe the discussions we had about all this with @Esther12 were before that - maybe even on PR. The history George M gives here is well documented and we made use of it to write letters to the SMC and Sense About Science and Colin Blakemore when certain prizes were awarded for standing up to angry patients. But it probably needed re-airing as these things get forgotten. I had a chapter on it in my book on PACE that I shelved and George M has that. But most of what I wrote came from George M or other sources he knows well originally.

Lots of discussion about this here, United Kingdom: Science Media Centre (including Fiona Fox)
 
OK but that is actually wrong too. The poor methodology and invalidity of the results is transparent from the original Lancet article - which was the basis for my expert witness testimony to NICE. Getting the PACE data was a huge and necessary achievement in order to see the detail of the manipulation but it actually made no difference to the interpretation.
As much as we want medicine to be guided by science and evidence, and it should be, we still live in a world in which facts aren't quite true until authorities acknowledge them and the professionals under their rule not only accept them but use them as is in their decision process. At least facts that aren't predictive and reliable enough for people to simply replicate them for themselves.

We were right decades ago. We aren't more right today about it, the facts are the same. But that those facts have been acknowledged by some medical and scientific authorities does matter more than the facts themselves. Unless a scientific fact or theory can make accurate predictions, scientific knowledge remains largely a popularity contest where people, experts but still people with their own biases and agendas, vote on what is true and on what the facts are.

Most MDs look at those trials, including PACE, and think they are great, they are satisfied that being taken as is by authorities assures them that it's all true and good and that they don't need to look any further. They are assured that the emperor's invisible clothes look great and silky and golden, they're not going to be the ones disputing that. Even knowing about the methodological flaws, the moving of goalposts, the flawed definitions, the lack of proper controls, the fact that the treatments are basically all about influencing responses. They feel confident that all of this must be a misunderstanding since authorities, and most of their colleagues, think it's fine and valid and good.

In the same vein, if one day the Lancet, likely with a different editor-in-chief, acknowledge their error, does what they did with the vaccine MMR paper, the facts will not have changed, but the fact that a prominent organization in academic medicine will acknowledge it will matter more than the facts themselves.

We don't live in a just world. In fact we live in an unjust world where all facts are political right up until they can be formed into a coherent predictive scientific theory. Which is not a state that all facts can reach. The facts are what they are. We know better. But that doesn't matter, because we are nobodies, and almost every medical institution believes otherwise, which matters far more than inconvenient facts they choose to ignore.
 
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Tweets from George Monbiot on the article:

This story is one of the most disturbing I've ever covered. It's about how the views of a deeply weird ideological sect affected science, medicine and the media, with devastating impacts on patients. Please read and pass on. This horror has to stop.

I see my own profession, the media, as being as culpable as any. How did we allow a bizarre sect, with a phenomenally cruel and brutal agenda, to set the prevailing view of this and other issues? And it was right across the board: just about every major outlet in the UK.

Here's some background to this story, which is, frankly, even weirder than the contents of today's article. 21 years on, I still ask myself, wtf is going on?
https://www.monbiot.com/2003/12/09/invasion-of-the-entryists/

And here's what other members of this cult went on to do:
https://www.theguardian.com/comment...spiked-magazine-charles-david-koch-foundation

They seemed to apply a highly effective formula: use Trotskyist entryist tactics to promote an extreme rightwing agenda. The UK Establishment (and the Hungarian government) turned out to be highly receptive to it. They got grand positions, honours and a massive media platform.

Starting in the late 1970s, they pioneered what later became the Tory culture wars. The human cost was immense - and continues to this day. But I see them as an anti-empathy cult. So they can hardly be expected to care.

The media are total suckers for a cult. See this thread for another astonishing example:
https://twitter.com/user/status/1760282432572366942


One more thing. The majority of ME/CFS sufferers are women. Inevitably, this means: a. the illness receives less attention b. sufferers are likely to be dismissed or ignored c. doctors are more inclined to believe the causes are psychological Misogyny still runs deep in medicine

 
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.
A historical record of the complete intransigence they show even when backed up in an argumentative corner.

We know it won't matter soon, but later on when this becomes litigated, and it will, it will show the massive failure of those institutions and how all of this was a completely fabricated tragedy, there was nothing natural or inevitable about it.

This is a political process, not about facts. Cochrane is wrong on the facts. They don't care. Only politics can force their hands, they will never care about being wrong because it has nothing to do with that, it's about power.
 
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Also on this thread: Article by Fiona Fox (SMC) for the Revolutionary Communist Party (c. 1996)

That’s where this bit comes from in George’s article:

“But she [Fox] had written an article for the RCP’s journal appearing to suggest that ME is caused by losing your ‘framework for understanding the world’.”​

George wasn’t the only journalist to contact me about Fox’s RCP/LM article but he is the only one who has run with it.
 
Thank you George Monbiot, although it has taken me ALL day to read through it. So before I crash for another few days, here's my take away from it.


“How could this happen in the 21st century? This question could apply to many issues, but this one sends you reeling. A brilliant and lively young woman with a common illness was repeatedly disbelieved, dismissed and given inappropriate treatment, until she starved to death. It is a terrible result of the most remarkable situation I’ve ever encountered in either medicine or journalism.”


“The RCP’s magazine, LM (previously Living Marxism), claimed, “It is those who have suffered the most who should be listened to the least.”


In one of the links in the body of the article dated 1st November 1998 , I discovered that George has been writing about this for a very long time.


“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.”




The UK Human Rights Act gained Royal Assent on 9 November 1998. It represents our national legislation of the Universal Declaration of Human Rights and Fundamental Freedoms as explained in this video.


Universal Declaration of Human Rights | OHCHR [6mins]




It took 3 years for the United Nations to create this document which includes [bold highlights are mine]:


“Article 25

1. Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.“


“Article 27


1. Everyone has the right freely to participate in the cultural life of the community, to enjoy the arts and to share in scientific advancement and its benefits.”



If we are to blame for our own deterioration through false illness beliefs and deconditioning as they have long claimed, we indeed become, in their eyes, the ‘underserving sick’ they feel entitled to call us. The ‘Malingerers’ playing the 'sick role' for secondary gain - Malingering and Illness Deception Meeting, 6th-8th November 2001.



Bullseye I believe.
 
About 15-20 years ago a senior biomed researcher (can't remember who) said that the solution to ME/CFS is not scientific, it is political. Meaning the barriers to progress were more political than scientific.

Never more so than now in the UK. I've just discovered that the Tory Shadow Minister for Health and Social Care is a psychiatrist interested in Chronic Fatigue Syndrome Research and Care. I've detailed it here https://www.s4me.info/threads/uk-of...elivery-plan-process.40610/page-2#post-560316
 
Diverging from the current discussion on this latest Monbiot article, I have just read the Wikipedia page for the Revolutionary Communist Party and noted that it does not include any reference to their activities regarding ME/CFS & SMC. I recall that at least one member here (not sure who) had experience at proposing page edits and was wondering if this article would justify an attempt to submit an edit.

I realise the organisation is now defunct but obviously the previous members remain active & somewhat influential.
 
https://www.drbenspencer.org.uk/news/reforming-mental-health-act

Prior to his election to Parliament, Dr Ben Spencer worked for 10 years as an NHS doctor, specialising in mental health. He was involved in Sir Simon Wessely’s Independent Review of the Mental Health Act as a member of one of its working groups, and holds a Masters in Mental Health Law, focussed on the operation of best interests, and a PhD on Decision-Making Capacity.
 
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