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

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).

 

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.)

 

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.

 

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.

 

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.

 

George's article in the print version:

 

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.

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.

 

Lots of discussion about this here, United Kingdom: Science Media Centre (including Fiona Fox)

 

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.

 

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

 

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.

 

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.

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.

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]:

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.

 

https://twitter.com/user/status/1847235064012136658


Thinking about the issues listed in this thread, it seems to me that there's a strong case for a public inquiry into the chronic mistreatment of people with ME/CFS.

 

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.

 

There's also a Wikipedia page for their equally-defunct magazine, Living Marxism, which currently quotes Monbiot & could also be expanded.

Also the Wikipedia page for the SMC has a "Criticism" section but nothing about ME.

 

https://www.drbenspencer.org.uk/news/reforming-mental-health-act