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

I think politics is OK provided it specifically relates to ME/CFS.

 

So saying that members of political parties quite like food, drinking, are in the habit of breathing, and use the toilet - would be banned under rule 12 (as generalisations about members or supporters of political parties), and not just rules 4 (taking this thread off topic) and 5 (no medical advice).

 

Those are no more generalisations of a political group than of the whole of humanity, though.

And if something is an essential process of living, is it really a generalisation, or just a basic need?

(I take the point some people may not strictly 'like' eating and drinking, but they certainly need to do these things.)

 

A friend of mine who is severely affected has just had a poem published about medical misogyny.

Some excerpts are below but I hope people will visit the site for the full version.

Tarnished idol, whom I sought to revere: ...

You favoured male cell lines, male mice;
blithely sent us home with stopping hearts,
and peeling myelin sheaths. We were, you claimed,
just hurt by careless love or mired in sulk.

So certain were you that this hamstrung life—
dreams shipwrecked, stripped of rigging, in my depths—
was trifling, girlish neurasthenia:
Paxil and pure thoughts could will me back.

Medicine, will you reprove your faults?
...

Full poem

Go to this thread to discuss the poem.
https://www.s4me.info/threads/a-jus...-misogyny-re-me-cfs-and-more-generally.22646/

 

George Monbiot in the Guardian:
Maeve Boothby O’Neill died because of a discredited view of ME. How was this allowed to happen?

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.​

Monbiot also writes about the Revolutionary Communist Party, the Science Media Centre and how it shaped the narrative about militant ME/CFS patients. I believe this is the article Geogre Monbiot promised in the video with David Tuller.

https://www.theguardian.com/comment...eve-bothby-oneill-me-chronic-fatigue-syndrome

 

I would like the senior members here to consider if it would be worthwhile writing a reply to George’s latest article referencing the long running Cochrane debacle?

 

George knows about this. In fact some members have had quite lengthy discussions with George and the material in the latest article reflects that. The political motivations at Cochrane are less clearly within George's field of interest - more to do with internal medical politics.

 

Huge thanks to @George Monbiot for this and to everyone who talked with him -- I think it's overall a good article on such a tragic cause.

One minor thing on the title and teaser -- not sure if relevant at all:

Could it be a bit confusing to have "ME/CFS" split up between title and teaser?

In the text, it's always "ME/CFS", written-out when first mentioned in the second paragraph.

If others think it's worthwhile to edit the title -- add /CFS to ME -- could anyone alert George? (Is he still on X-Twitter?)

 

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.

I actually think George gets some things wrong here. And he says CBT and GET are no good because NICE says so. But that is just appeal to another authority, and will go down like a lead balloon at Cochrane.

The key mistake that I see is dividing illness into 2 thought boxes:

1. Physical: Broken leg: Treatment: Alive

2. Psychological: Sectioning: No treatment: Dead


And that is not the story. The reality is three boxes:

1. Physical/ broken leg: Sedation etc. if needed: Treatment: Alive

2. Psychological/functional: No sectioning/ no etc.: No treatment: Dead

3. Psychiatric/insane: Sectioning + etc. if needed: Treatment: Alive

Maeve died because she was denied belonging to either 1 or 3. She died because she was put in the middle category of 'neither ill nor mad just all your own fault'.

For the public George's account is fine. In order to change things and get the medical profession to understand what it is doing wrong we need to move to the 3 box model. Sectioning exists to protect people from their own illness.

 

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

 

While I agree with your suggestion on the three-versus-two-boxes, I think the bit about appealing to authority by referencing NICE is not what George actually did.

Before he mentions NICE he writes:

"But the critics were right. When a tribunal ordered Queen Mary University of London to release the data, it revealed major flaws. What appeared to be positive results were artefacts of poor methodology. Other such papers were corrected, debunked or withdrawn."

 

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.

 

It's true it made no difference in whether the trial was a piece of garbage--that was apparent. But it made a big difference in being able to document that the methodological mess had the impact on the results that everyone suspected it did. Probably would have been better phrased as "revealed the impact of the major flaws" or something like that.

 

The other thing that the release of data reveals is that not only was the research design inherently flawed but also the researchers, whether with misguided good intentions or as a conscious fraud, manipulated the data to realise their desired outcomes.

 

Not sure if its actually wrong or just not clearly worded. "The critics were right" I think is the important part.

Edit: What @dave30th and @Peter Trewhitt said


There are still many 'experts' in the relevant disciplines who think that it's OK to use poor trial methodology in assessing therapist-delivered treatments and that it would provide sufficient evidence to base recommendations on it. But this is a complicated story that I think needs other people to get it right (see all the discussions on S4ME) and cover it in a prominent place.

The closing of George's piece is all against an appeal to authority:

"This is how science should work: improvement by scrutiny and challenge.

"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."

Of course the SMC played only one part in the whole scenario, but for the UK I think its influence was huge. I think it's very useful to have such a succinct account of that.

 

Just thought that paragraph on the Science Media Centre (SMC) deserved quoting, too:

https://www.theguardian.com/comment...eve-bothby-oneill-me-chronic-fatigue-syndrome

 

I don't think it made any difference in reality, David.
It may have provided information on how they were able to make statements about 'recovery' but from a scientific point of view you don't even read those statements, you look at the trial design and the data. It was transparent that the data were not just misleading but completely meaningless from the Lancet abstract. I remember being gobsmacked as to how weak it was when I first read it.

I think Peter Trewitt is right on this. 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.

 

But, over and above the arguments given, that is just another appeal to authority. George doesn't actually mention why the trial was a non-starter. 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. The PACE paper itself tells us that there is no reason to think there is any such suggestion because the trial was self-fulfilling.

 

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.