George Monbiot on ME/CFS, PACE, BPS and Long Covid
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Chandelier
Senior Member (Voting Rights)
How very depressing.
Is it this Podcast with all those links to the brain retraining alternative medicine mafia?
So Long Covid | Google Translate
AustralianwithME
Established Member
I noticed he only posted this on Blusky(i think) and not on X (twitter) since 2025
Is X still the best place for up to date MECFS related news (besides these forums)?
Is X still the best place for up to date MECFS related news (besides these forums)?
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Yes, that one.
They are also in every article praising Mind-Body-Nonsene for Long Covid or ME in the media, the portrayed persons who apparently 'recovered' with these methods always is one of the same 5-6 people affiliated with or mentioned in this podcast.
Together with the University of Basel, namely Katrin Bopp, Rainer Schäfert and the psychosomatics department, these same 5-6 podcast people are basically responsible for every single bit of positive coverage this bullsh*t gets in Switzerland.
Of course like I said it gets applied elsewhere, but the constant pushing for "neuroplastic methods" a.k.a. Brain Retraining stems exclusively from these individuals mentioned above.
MrMagoo
Senior Member (Voting Rights)
I wanted to boost this point because it happens time and again to the ME community.
A very unique reasonable adjustment would be to allow more time but it’s never built in, is it? Surveys, trials, requests always pop up then close really fast because the requestor has “enough replies”. God forbid an able person should have to wade through more replies, it might tire them out.
Two things - we are slower to reply, and there are so, so many of us who want to contribute to discussions about us.
I will give George some grace because he’s ultimately a journo rather than an academic/charity
hotblack
Senior Member (Voting Rights)
But as you say it’s a demonstration of how little people understand or are willing to make even small adjustments. Even people who are seen as advocates or on our side. We get it with charities too.
I appreciate that there’s a journalist to give some visibility, we need it. I’m not a fan of George though and fear his support will just be used to further paint a particular picture of us.
Chandelier
Senior Member (Voting Rights)
Interesting.
As someone who's not familiar with his reporting – apart from the famous "biggest medical scandal of the century" quote – would you mind elaborating on your concerns?
Jonathan Edwards
Senior Member (Voting Rights)
I have reason to believe that George was fairly inundated with material, including from members here and I think he just had too much to process. I think he may also have come to see that pulling out the reality from everything he has been sent may be more complicated than he had thought!
Chandelier
Senior Member (Voting Rights)
From Bluesky:
George Monbiot @georgemonbiot.bsky.social
Sorry not to be reply to everyone who responded to my info request about #ME/CFS treatment y'day. Totally overwhelmed by utterly horrific stories. Now busy pulling it all together. And starting to see that there's a whole other story to be written (one day) about capital and chronic conditions.
But for now: thank you very much to so many people for whom writing a message is a major energy drain.
V.R.T.
Senior Member (Voting Rights)
Yeah I was quite frustrated to be honest. I saw the call for stories on here, ended up writing quite a few paragraphs about my experience with 'care' post 2021 NICE guideline, compulsively pushing through my limits because it felt important, made myself stop rested for a couple of hours, finished it and immediately saw that it was closed. This happened in like a 3-4hour window.
And now I've yet again written something that's brought home just how fucked up everything is in my life only for there to be nothing to do with it because there were 'too many replies' already, an unwarned about deadline that is almost always too tight for pw severe ME to meet, even if they pushed through the warning signs to meet it like I did.
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hotblack
Senior Member (Voting Rights)
I agree with a lot of his goals for a better, fairer world. But not his methods. Some see him as a posh boy playing at being a right on activist who preaches at people from a position of privilege. He’s been a popular figure in parts of the green movement for a long time and also parts of the wider left wing politics sphere more recently. I’ll steer clear of the politics for forum rules but it’s an important part of his story.
He’s more an opinion writer and activist commentator than a impartial journalist. And so is seen that way by many. He does not always base things in science or evidence and often paints clear rights and wrongs with himself and his supporters on the side of right of course. His tone can be quite combative and divisive. He and the Guardian have a good history of pushing their own poor science and misinformation too. The cause seems to be more important than facts. It’s not IMHO what we need and is more in the vein of those we criticise elsewhere for making patients feel good but not really helping. He’s someone who is a hugely popular figure in terms of people who already agree with him. But IMHO a poor advocate, who does not persuade or bring people with him and in fact often pushes them away. People don’t like to be preached at in the way he does, and his background and actions in some areas means he can be dismissed by people we need to listen and take us seriously.
He’s seen as a great voice for some. Says what they want to hear, what they feel others do not and is articulate and passionate on a range of issues. And ready for a fight. If you want an activist to get people going at a protest or rally (or to sell newspapers) he’s perfect. But I do fear if he is seen as a figurehead it will reinforce the image some have of the ME/CFS community and an image that S4ME works hard to move us away from.
Look, I’m torn. I want someone to fight for us. I want public and political attention on the problems. And we need more people with us. But tbh I think we can and need to do better in terms of those who represent us. He may bring a higher profile and that can be attractive but I wouldn’t be surprised if it’s less effective than people hope. I know good people who like him and good people who seem him as a joke.
Others will disagree I’m sure. I tend to steer clear of these threads tbh. But it may be useful for people to understand or at least hear another perspective.
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V.R.T.
Senior Member (Voting Rights)
The idea that [(edit: rephrasing) posh activists/left wing writers are just cosplaying] is a time honoured trope. As is the reality of people from very posh backgrounds like George Orwell who are committed to their views on a 'getting shot in the throat fighting fascism for them' level.
I read Monbiot semi regularly and admire him a bit, even if I don't always agree. I wouldn't call myself a 'fan' though. [Edit: a good part of this admiration is due to the fact he is one of the only prominent columnists/journalists who writes about us]
I think quite often the people who criticise people like him for being too posh also criticise everyone involved in the climate movement because there is no 'correct' background to have as a left winger or activist. You will always be painted as somehow a fake or a phony who is insincere and just wants to be seen to be doing good or whatever.
I can't think of a single prominent left wing commenter who doesn't have some kind of 'but they're a this' narrative around them coming from certain elements. Its one of the most common ways that left wing people in prominent positions are discredited for their opponents. I think it would be short sighted to say we don't want any left wing journos or politicians on our side because none of them match the impossible standards set for them by the establishment or people who disagree with their views. I also think that opinion writers are widely read and have built in audiences in a way more serious jornos usually don't, and it could be helpful to have more involved. But having some really serious 'proper' journalists to really blow this story wide open in all its sprawling horror is the dream.
I think we need people across the political spectrum involved. I'm certainly no fan of Sajid Javid but was very glad when he tried to do something to help us. Ditto the Times coverage. I would really like to see some in the government wake up to reality but they seem to be beholden to the political wing of Labour responsible for PACE etc.
A thought- somebody who might be good to try and get involved on the left commentator/activist side of things is Naomi Klein, who is adept at untangling and elucidating for her readers precicely the kinds of goverment/corporate/financial [edit: and institutional/ academic] skullduggery that has led to our situation (see her book The Shock Doctrine).
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Chandelier
Senior Member (Voting Rights)
Thank you very much for your in-depth reply!
It's really valuable to hear a differentiated perspective on this.
MrMagoo
Senior Member (Voting Rights)
I was working in the Green world in fact George used to pass by the office, many years ago.
I think he fair acknowledges he’s a “posh boy” it’s not that unusual in that world, people either tend to be public school or swampy.
Many of the Graun’s journalists are essentially opinion- writers/columnists on pet subjects rather than your Wiki-leaks exposure hacks. It’s the way of the world and not just at the Graun.
I don’t think he’s the worst person to be writing about us, even if he isn’t the best, and he has been using his fair-sized platform off his own back (I know he is motivated from knowing pwLC or pwME in his personal life)
I think he fair acknowledges he’s a “posh boy” it’s not that unusual in that world, people either tend to be public school or swampy.
Many of the Graun’s journalists are essentially opinion- writers/columnists on pet subjects rather than your Wiki-leaks exposure hacks. It’s the way of the world and not just at the Graun.
I don’t think he’s the worst person to be writing about us, even if he isn’t the best, and he has been using his fair-sized platform off his own back (I know he is motivated from knowing pwLC or pwME in his personal life)
I think the 'posh boy' image and reality cuts right across the political spectrum in the UK. Look at some of the party leaders in all parties. I prefer to judge journalists and columnists by the quality of their output, not the background they were born into which is not under their control.
On the subject of time limits, it might have been helpful if Monbiot had specified a time limit as soon as he announced he was looking for information. I'm sorry to hear some expended a lot of precious energy preparing to send something only to find you were too late.
On the subject of time limits, it might have been helpful if Monbiot had specified a time limit as soon as he announced he was looking for information. I'm sorry to hear some expended a lot of precious energy preparing to send something only to find you were too late.
BrightCandle
Senior Member (Voting Rights)
This has happened quite a lot with journalists asking ME/CFS patients for input. I have multiple times now responded to them asking for comments from me and found that I was too late because it took me 4 hours to respond. They are working on normal person time scales and in the ME world, especially the severe one we tend to look at maybe doing something like that in a week with all the preparation and gradual exertion that comes up to sending the message.
Its a part of this disease I really wish journalists took seriously, to get that severe perspective you are going to have to wait, you should expect answers to trickle in and be slow. Their industry is all rush but our world is running on a different clock because our bodies can't do it anymore.
This is something that will soon massively change with AI. It will be possible, even easy, to spin up an agent with many sub-agents to do all this processing, in real time. 1K responses, 10K responses, 1M responses? Doesn't matter, it will be able to handle it all. 50 pages of notes and several audio and/or video interviews where they ask questions dynamically based on what they accumulate out of the other responses? Easy peasy. It will simply be a matter of putting in the budget, and it will go from thousands at first, to hundreds then just a few dollars.
One problem with giving us justice is that it's very labor-intensive at a very high academic level, and there are never enough people with enough time to do it. It would take hundreds of people working full time for it, even for the smaller countries. Hell, it never even reached 1% anywhere. All of that goes away with AI, once it's ready for it.
We have never been able to depend on healthy allies in part because whenever someone involves themselves they get immediately overwhelmed by the mass of need and suffering, and they back away from it. There is already so much recorded data anyway, in tens of thousands of articles, interviews, reports, studies. There is in fact so much of it that no one can do this without a huge budget sustained for many years. This will completely change soon.
I would counter that we could use attention and support also specifically within the moderate left-liberal camp, where such journalists are often read and taken seriously. Perhaps I’m misjudging the situation, but at least in Switzerland, columns like Monbiot’s are often read by people I would somewhat loosely describe as the left-liberal upper class or the left-liberal establishment.
As far as I know, the people around Wessely, Sharpe, Chalder, and others in the UK are or were held in high regard specifically by this type of people, particularly inside the Labor Party. It certainly can’t hurt, therefore, if people within left-liberal parties—but especially potential voters and supporters—can be reached through someone like Monbiot. And after all, for example, there are certainly doctors in the UK, with left-liberal views who sympathize with Labor or the Greens and read such columns with interest.
I would understand your concerns better if Monbiot constantly linked ME to some "left-wing" or "green" issues in his articles and interviews which could prevent people from sharing his articles with those who hold conservative views, could lead to framing of ME as a "left" issue and preventing conservative people from taking it seriously.
But as it stands, his most influential article has been cited and shared abroad, and newspapers and media outlets are quite fond of quoting from it in articles about ME, also because the Guardian and Monbiot himself surely aren't THAT left wing that centrist media wont quote them. Abroad, people generally don't know exactly who Monbiot is or what other views he holds, but what they do pick up on is that the way ME is handled is apparently seen by at least some people in other countries as a major scandal which by itself is a really strong and useful message.
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Jonathan Edwards
Senior Member (Voting Rights)
What I have seen from George today is a very straightforward update on the ME/CFS scandal saga, bringing in some important points from the past for readers not yet engaged and describing in broad terms how things have changed (research) and not changed (treatment) recently. I think people will like it.
hotblack
Senior Member (Voting Rights)
Thanks for that context. It’s useful to see from a different perspective. I was trying to explain a view that is present in the UK to people who may not be familiar with that background, that’s all. It’s useful to hear how the message is seen elsewhere.
Some of those within that group are precisely those who do dismiss him here.