What we're not being told about ME - UnHerd (Tom Chivers)

Sly Saint said:
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"But that once the fatigue had been triggered, there were a number of factors which perpetuated it, but principally a fear of making symptoms worse and this all or nothing approach to activity which often leads to fear avoidance.

So the CBT was based on the actual model and included a structuring of the daily activities people had been struggling with a gradual return to normal activities over weeks and sometimes months.

And the idea was to stabilise their activities, have it more consistent, and then build up gradually so that their confidence was built. And then we addressed unhelpful beliefs related to their fears about making symptoms worse. I have to say at this point that we weren’t trying to change peoples attributions from physical ones to psychological ones."

"So what changed in our study. Well the thing that changed and seemed to be associated with a better outcome was the belief that exercise should be avoided and that doing less helped fatigue. That was the thing that changed. What didn’t change was their belief in the fact they had something physically wrong with them."
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I can only speak for the earliest years (<1993), but while technically true it is not in two of her earliest papers about the therapy to explicitly explain thoughts like thinking you have ME b/c of symptoms as a "distortion of reality"*, I fail to see a big difference in effect between that and "cognitive work to break the association between increase in symptoms and stopping or avoiding the activity" by someone who firmly believes your illness is a neurosis, an "abnormal illness behaviour", who probably shows it, and who is specifically focused on wheter you think you have ME or not. Also, Chalder and Butler on the Wessely side of early beginnings (there were two currents coming together, Institute of Psychiatry and Oxford) were originally Behaviour Therapists, so it's not strange that initially the heaviest focus lied on that, the 'unwarranted behaviour' of avoidance of activities, with the cognitions as driver of that avoidance.



*I got this from the PACE trial CBT manual, which seems to be dated 19/6/2002, which seems early (so maybe a dossier number?). This is session 8-12. Session 1 starts with the instruction that the therapist should "acknowledge the reality of symptoms and the distress and handicap caused" while "conveying warmth and genuine interest" and that "the therapist should be open-minded about the cause of the symptoms". From that to the instruction of session 8-12, that's just plain purposeful abuse.

Sly Saint said:
"So at the end of that sort of era, if you like, we found that there was some evidence for a cognitive behavioural model of fatigue syndromes, and it was CBT or a modified form of CBT was the effective treatment for adults and children with fatigue syndromes in a variety of settings.

The NICE guidelines took it on board and they recommend and they still recommend at the moment that CBT and Graded exercise therapy should be offered to people with mild to moderate CFS."
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A. Does she mean the PACE trial as the end of that sort of era? B/c that was published 22 years after she started CBT for ME, quite a long time to set it loose on people while you're claiming still to be in the process of discovering if the model your approach is built on even applies.
And what does she mean with a "modified form of CBT"?

B. They're always so quiet about severe ME. In theory the "effect" of their therapy should be the same in severe ME (same model right?), and in practise it is deemed so. Have they ever explained why CBT is (pure theoretically) not offered to severe ME patients? (Their dutch branch are less cautious and have said that it's because severe ME patients don't want to while they could be helped.)
 
chrisb said:
What's all this about a new definition.
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It all boils down to the use of PEM as the cardinal symptom for diagnosis.

(PDW complained about this as being the reason for the down-grading of the PACE trial)

But presumably there must have been consensus on this as a prerequisite for accepted ME/CFS diagnosis quite early on in the NICE committees deliberations so that the 'research team' who then graded the evidence knew what the criteria was.

Anyway, a lot has happened since then and PEM, exercise/exertion intolerence is now becoming accepted across the board as a good indication of ME/CFS (and being used in Long Covid definitions).
 
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Jonathan Edwards said:
Tom Chivers seems to be remarkably naive. I could have explained to him all the stuff he complains about not knowing. I fear he likes to find a story and run it without actually getting to grips with the background.
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One might reasonably think that a journalist, upon receiving such obvious lobbying, would seek to corroborate the story through another source. There seems to be no mention of any such attempt.
 
I suppose this does at least serve the purpose of revealing to us the argument at least some of the objectors to the removal of GET are using to argue against it.

Of course the argument holds no water for the simple reason that none of the trials of GET showed any significant benefit for anyone, regardless of definition.
 
Sly Saint said:
Chivers now backtracking? Defending PACE........
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I'm not sure that's fair. He does explicitly say in the final paragraph "I am not endorsing any of what was said above...". I think he feels the need as a responsible journalist to present the 'other side' of the debate, given that he couldn't get anyone to comment for his first article. I suspect that someone -*cough Michael Sharpe cough* has belatedly realised what a mistake that was...

However - as Trish says - the explanation he's been given is largely nonsense and in his rush to publish a corrective article he doesn't seem to have asked any critical questions. NICE's new definition - which apparently necessitated the downgrading - is almost certainly an improvement that needed to be made, particularly if it was about recognising the importance of PEM as a symptom. The evidence for GET wasn't of a 'good' quality even before it was downgraded a level - it would all still have been moderate to low. And there's no evidence that GET is actually helping people get better and return to their lives. As Keith Geraghty tweeted this morning, data from NHS clinics show that only 5% of people treated by these clinics get better - in other words there's no difference from the figure that naturally recovers over time. The suggestion that there's a 'silent majority' of patients who've had a positive experience of GET but aren't speaking up just isn't supported by the available data.

“The colleges don’t want to come out publicly and say NICE’s committee screwed up.” That's a good closing quote for the article but there's not a word of truth in it. The colleges are very happy to say publicly that NICE's committee screwed up - the problem is that they're going to struggle to justify that claim in open debate.
 
Stewart said:
I think he feels the need as a responsible journalist to present the 'other side' of the debate, given that he couldn't get anyone to comment for his first article.
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He talked to several of us and we could have explained if he had asked.
He even put this weird subtitle in suggesting that it was NICE that was responsible for the poor evidence. I don't think he really understands the big picture.

Let's face it, if he was a serious investigative journalist he would have read the background published papers that set out all he needed to know.
 
Trish said:
Of course the argument holds no water for the simple reason that none of the trials of GET showed any significant benefit for anyone, regardless of definition.
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Exactly. If they couldn't even get a result in PACE using the weakest criteria (Oxford), which doesn't require PEM, what makes them think PEM is the issue?

There isn't even a point here for them to make.
 
Jonathan Edwards said:
He talked to several of us and we could have explained if he had asked.
He even put this weird subtitle in suggesting that it was NICE that was responsible for the poor evidence. I don't think he really understands the big picture.

Let's face it, if he was a serious investigative journalist he would have read the background published papers that set out all he needed to know.
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Be fair Jonathan - you know how this works. Any time a journalist - investigative or otherwise - publishes an article about ME/CFS which is less than 100% supportive of the biopsychosocial paradigm, they get a phonecall from a kindly-sounding senior member of the British medical establishment who very generously takes the time to explain where they've got it wrong. And given that generosity, it would be rude not to write their comments up into another article - especially if writing articles is how you make a living... :)
 
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