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

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.

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.)

 

Moved post

https://twitter.com/user/status/1430910672225767432

 

So...
Royal Colleges = good guys
NICE = bad guys

I suspect I may take that with several elephants of salt.

I knew there was a reason I don't generally read tweets.

 

Chivers now backtracking? Defending PACE........

 

Yep.

 

It would be interesting to know who got to him and who organised the getting. What's all this about a new definition. No-one noticed that in the draft, did they?

 

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).

 

Reply from Brian Hughes:

 

@Sly Saint thanks for that. So they are saying they don't like inclusion of a core feature. It doesn't seem right to regard that as a change of definition.

 

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.

 

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'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.

 

and of course the protestation that including PEM in the defintion of ME changes the definition of ME, from the one they made up, so is 'invalid' as a reason to degrade the evidence that they also made up...must say something...

 

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.

 

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...