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

The only route out available to us, the only one society at this stage of knowledge will accept is research findings.

I agree, but I would add that I think we have the research findings to turn the tide now.

Arguably the change occurred in August last year but for me the evidence has crystallised, partly through other studies but as much as anything through the sifting of ideas here, in the last six months. I have been out of London for that period and also had major family health issues. I get older and I am pretty tired, maybe from 4-5 bouts of Covid, but I think this winter we might get some people on board. I have a list of names I have not yet contacted - Frances Williams, who does genetics on chronic pain, Peter Goadsby who does migraine (both at King's), and so on.
 
And the patient charities aren't publicising this situation and campaigning against it because ... they feel they have to keep the NHS on side?

Good question. I strongly suspect that they just do not have a sufficiently in depth perspective on the clinical situation.

But 'being in the tent' has always been a point of friction when it comes to the charities. I was part of a discussion with Forward-ME member about this and nobody wanted to pick it up as far as I could see.

One irony is that Paine and co. emphasise a link to 'EDS'. I have no idea how they make a structural disease 'functional' but that is how bizarre the field is at present.
 
The issue is that people like myself have been harmed so severely by doctors that interacting with us, and truly accepting the reality of our illness and what we have suffered, is going to be a deeply depressing, sobering and existentially challenging experience for doctors until there are treatments to offer.

Not necessarily for some new recruits with a grasp of human nature who may be familiar with the background but are free from being implicated. I think there will be doctors like that. There used to be.
 
We just need to make it that ”automatic” reflex.

Thesedays a lot of medical staff have learned to trot out the line “it is a real disease and I believe you” we just need to train them to reflexively know we can’t stand for long/be around noise/start “doing more”

Many of them don’t need loads more than that (notwithstanding we need Severe and Very severe to have actual full protocols).


Have you ever told a medic you’re autistic? Because if you say that, very often they stop shouting, offer you ear plugs etc. I mean, they don’t actually “care” or “understand” they’ve just been told - do this for the autistics. And they usually do.
 
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made some comments to George about the use of citations on new research. But in the end he said nothing about the new research - the thing that will change things - because he has no familiarity with the methods and no way of judging what is actually new (DecodeME) and what is not (the Nature review focusing on Amy Proal and Michael Peluso).
2 of the 3 links on recent research are about DecodeME:
Something would have to be done. And a number of seeming scientific breakthroughs, some very recent, have begun inching towards identifying possible biological causes of both ME/CFS and long Covid. Now, or so we should hope, it’s undeniable.
One is a link to the DecodeME preprint and the other is a link to a Guardian article about DedcodeME (by Ian Sample, remarkably) which quotes Chris P, Sonya and Andy.

Across the 3 or 4 articles he‘s written on LC and ME/CFS I think he’s done remarkably well at distilling the right arguments and linking to the most useful sources from all the information he’s been inundated with.
 
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I agree, but I would add that I think we have the research findings to turn the tide now.

Competent physicians will be drawn in by the science. I have reason to believe that we are making some progress. I have been in touch with half a dozen relevant people and there is interest. I won't say more for the time being. I wouldn't be surprised if Germany got there first with some competent neurologists who understand the implications of the genetics.
This is very encouraging. Thanks for working on this and sharing.

I’m going to share these comments in the (much needed) Rational hope of treatment thread: https://s4me.info/threads/rational-hope-of-treatment.42417/
 
The comment section is mostly SAD to read.
From doctors denying medical misogyny to people stating they were cured with brain retraining.
I can't tolerate screens today, so I've read just a few. I'm upset.


I had a dig and there are definitely a lot of comments calling the condition a mental health condition and potentially medical staff in there questioning NICE. The amount of sad comments from patients all being gaslit and abused by their doctors is a near universal experience.
 
I haven’t read all the recent comments but I thought I would highlight the so-called Gibson Inquiry:
www.erythos.com/gibsonenquiry/Docs/ME_Inquiry_Report.pdf




It was a report by a group of parliamentarians.
I was sent what was supposed to be the final report a day or two before it came out. In those last 24-48 hours, something happened and it got watered down a bit.

I spent a number of days solely on my submission trying to prove the bias in the MRC which had at that stage only funded research by those of the biopsychosocial school. The MRC research strategy (2003) basically said research into the causes wasn’t necessary and was written in a way to support the FINE and PACE trials. The group drawing up the strategy had been biased with no dissenters to the BPS approach though Chris Clark (Action for ME CEO) criticised me for criticising the group and some others were weak.

The Gibson Inquiry possibly did lead to some changes as the MRC approach did change over subsequent years.
 
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As there was quite a lot of talk about "inquiries" here, either public or parliamentary, and a lot of you are discussing this from a GB only perception, let me give you an international perspective.

In many countries, as in my country Switzerland, there are no such thing as "public inquiries" and the parliamentary inquiries are extremely rare, they happen like once a decade and always had to do with money missmanagement inside the government.
Furthermore, in countries such as France, Belgium, and the Scandinavian countries, as of now there seems to be a complete lack of even basic awareness that there could be a problem.

This idea of “how can we finally bring justice” may sound tempting but it's useless and in many countries simply not possible, not even in theory.

The only thing that has worked politically is lobbying members of parliament and, in the best-case scenario, members of the government. That’s how the Germans managed to secure 50 million in research funding for post-infectious diseases, and that’s how we in Switzerland managed to at least force our Ministry of Health to address these conditions, although I have no real hope that they'll do something useful. The focus in both cases wasn't on abuse and malpractice, as most people see Drs. as saints anyway, but the focus was on suffering and not-fulfilled needs of people with ME.

With Drs. however it's basically impossible to reach them through politics or inquiries—politicians are too cowardly for that, and doctors are too stubborn. As has already been correctly described here several times, the only way to reach doctors is through research findings or, by chance, through personal contacts.
 
The comment section is mostly SAD to read.
From doctors denying medical misogyny...

Which comment section are they referring to? (joke)
Hope I'm not the only one seeing the irony here.
Not to single out doctors. The patients mostly agree with the psychologizers on this one.
 
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I had a dig and there are definitely a lot of comments calling the condition a mental health condition and potentially medical staff in there questioning NICE. The amount of sad comments from patients all being gaslit and abused by their doctors is a near universal experience.

My favourite part of the Guardian comments section was “GingerAnne” repeatedly replying to people to promote brain training.
It clearly didn’t work as she was seemingly stuck in a loop, going round and round again blathering on about DKNY or something, IDK I was bored and stopped paying attention.
Those neuroplasticine types really need deprogrammed.

Who is of a certain age and remembers the Mop Top Hair Shop by play doh?
 

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I agree, but I would add that I think we have the research findings to turn the tide now.

Arguably the change occurred in August last year but for me the evidence has crystallised, partly through other studies but as much as anything through the sifting of ideas here, in the last six months. I have been out of London for that period and also had major family health issues. I get older and I am pretty tired, maybe from 4-5 bouts of Covid, but I think this winter we might get some people on board. I have a list of names I have not yet contacted - Frances Williams, who does genetics on chronic pain, Peter Goadsby who does migraine (both at King's), and so on.
Dear Jonathan.. I’m sorry you’ve been dealing with your own and family health issues.

Thanks for reaching out to new researchers and for providing optimism. You give me a lot of hope and I’m so grateful to you that you spend so much time and effort to help us, despite feeling old and tired!!
 
This thread is about George's article. I made some comments to George about the use of citations on new research. But in the end he said nothing about the new research - the thing that will change things - because he has no familiarity with the methods and no way of judging what is actually new (DecodeME) and what is not (the Nature review focusing on Amy Proal and Michael Peluso).
His editors might be the problem. I actually doubt it in this case, but they do have final say over all content.

Doctors know what not to do for people with a whole list of injuries, infections and diseases. They could also know what not to do for people with ME/CFS.
Exactly. There is simply no excuse for this savagery to continue on a second longer. Never was, but even more so post-NICE, et al.

So the question is: why is the governance structure so reluctant to meaningfully act on this issue?

Everyone knows its a psychological disease and treats us accordingly, its a societal fact, not a real fact but people believe many things are true that aren't and this one has intense propaganda invested behind it.
It is one of the greatest propaganda success stories of all time. I am not joking. It is impossible to exaggerate how effective it has been.

Because they did it via the scientific quality control mechanism – the sacred peer review journal system.

If they can hijack and corrupt that institution to that extent, and with relative ease, and prevent any meaningful accountability and reform, then they can do it to any other governance process and institution, and they have, ruthlessly.

But 'being in the tent' has always been a point of friction when it comes to the charities.
My view is that any reforms in society usually need some in the tent working with the formal institutions and processes, and some outside it throwing well aimed rhetorical bombs at it all.

Not necessarily for some new recruits with a grasp of human nature who may be familiar with the background but are free from being implicated. I think there will be doctors like that. There used to be.
I do wonder at times if that capacity in medicine has been lost, or at least greatly diminished.
 
Meanwhile it's very notable how the current frenzy in the UK over the cost of disability (which hasn't actually increased despite a rise caused by LC) is how so many people are receiving benefits for "anxiety", when actually most of those are intentional mislabelling, hiding illnesses that medicine refuses to even properly record, let alone work to solve.

I do think that we need to be telling politicians talking about this that the only real way to help with the 400k people with ME + long covid people meeting ME guidance is to fund research and that the MRC and hence government have refused to take action in this area.
 
I do think that we need to be telling politicians talking about this that the only real way to help with the 400k people with ME + long covid people meeting ME guidance is to fund research and that the MRC and hence government have refused to take action in this area.

I agree. The tricky thing is that it is hard to do much constructive research, beyond a mail-in GWAS, without clinicians seeing patients so that the science can be made sense of in terms of how it actually affects people. Fifteen years ago people like Amolak Bansal filled that niche. We need someone to do it now. There may be one or two opportunities. Next month I will be in London and trying to persuade colleagues to come on board.
 
I agree. The tricky thing is that it is hard to do much constructive research, beyond a mail-in GWAS, without clinicians seeing patients so that the science can be made sense of in terms of how it actually affects people. Fifteen years ago people like Amolak Bansal filled that niche. We need someone to do it now. There may be one or two opportunities. Next month I will be in London and trying to persuade colleagues to come on board.
There have been suggestions to form a clinical centre of excellence particularly around severe ME to try to fill that type of gap but no takers and I'm not sure who would need to set such a thing up (NHS/NIHR).
 
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