Cognitive Behavioural Therapy for chronic fatigue and CFS: outcomes from a specialist clinic in the UK (2020) Adamson, Wessely, Chalder

Due in the Journal of the Royal Society of Medicine

https://kclpure.kcl.ac.uk/portal/files/132955332/pdf_proof_re_submit.pdf

https://kclpure.kcl.ac.uk/portal/en...fs(67b43c92-f30b-4e21-a7b6-1b94e2ead525).html

 

The version currently on-line seems to be missing a lot of information that should be in the final paper.

Pretty sure this study was another one using silly criteria for 'recovery':

I'd just seen someone here posting about whether age affected prognosis:

edit: As Trish notes: "All met NICE criteria for CFS."

So presumably even more than 31% was missing from follow-up?

I think other data has also indicated that the improvement in self-reported outcomes come very early on.

 

Could charities/ APPG group request data ?
Though not researchers it would surely set the wrong tone to refuse such groups?

Or am I being incredibly naive on low sleep?
ETA spelling

 

I don't understand this:

"According to self-reported accounts of their symptoms, 754 (76%) participants met Oxford criteria for CFS and 518 (52%) met CDC criteria for CFS."

Who were the 24% that didn't meet the Oxford criteria? Did they meet CDC criteria but not Oxford criteria? That would be interesting, since in PACE the CDC criteria group was a subset of the overall Oxford group, based on the apparent presumption that anyone who met the CDC criteria would automatically have met the Oxford criteria as well. They made a lot of hay out of saying that PACE applied no matter how the illness was defined.

Now something else seems to be happening.

What percentage had PEM? I didn't see that. Maybe none of them. So it wouldn't be surprising if CBT helped people with generalized or idiopathic fatigue.

 

@Trish caught the sentance I missed "All met NICE criteria for CFS."

I think it came before the bit I quoted, so I just forgot about it.

 

Interesting. SW has given indication that he got out of CFS research a long time ago (re: his personal website - not going to link, trackbacks and all that). And here he is. Again.

My takeaway is that they have realised the GET boat is sinking and they are trying to shore up the need for continuing to use CBT with a large and recent study.

EDIT: If in fact 100% of participants met the NICE criteria, then I'm assuming that this study is for the benefit of NICE guidelines. None of the major ME/CFS papers say they diagnose with NICE guidelines, so this paper is much more "useful" for that purpose.

 

After I posted that, I saw what Trish wrote. But I still don't get it. NICE requires four months, not six months. So that means a quarter were people who had four to six months of fatigue, since by six months they would have qualified for Oxford? Does that make sense at all?

 

I saw the journal says it has open peer review, so when it's published we can have a look.

 

Interesting that they did not include any changes in hours worked or benefit claimed. I seem to recall that somewhere an evaluation of the UK/ME specialist services showed service users ended up working less and claiming more benefit on follow up.

 

More of the same, from the same.

When are they going to stop beating their partners, show some truly innovative thought, really dig deep, to try and further understanding of this 'complex' condition, and use sock colour as a primary outcome measure?

 

Except for the exclusive reliance on subjective self-report without adequate blinding or objective measures thing.

All this sort of paper demonstrates, yet again, is that they can induce changes in self-report scoring behaviour in some patients.

They have yet to demonstrate that this phenomenon delivers any actual meaningful practical benefit to those patients.

 

If a patient was missing 25% or less of the data from any questionnaire, a prorated score was calculated (this used the mean of the remaining items from the same individual to calculate a prorated score).

Why not just make it all up as you go along? What science is there to validate this as a means of creating data?

 

I have often heard about various tricks the clinics of this kind use to make the treatment look successful. Presumably they do this to survive, because of the expectation set by the PACE trial and other studies that CBT/GET are effective. A clinic without results would simply be closed.

For example, one of the tricks is to remove patients from their programme at the first sign of problems. That hides failure or harm.

It's circular thinking all the way. CBT/GET were declared to be the solution, then the trials were done to prove it (with methodology as poor as was required to obtain the desired results). The clinics then do their best to pretend these results are really obtainable. Now the data from clinics is said to add to the evidence that CBT/GET are effective.