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

Paywalled at https://journals.sagepub.com/doi/10.1177/01410768211016791

 

Merged thread

This is a response to @Mark Vink, his wife (i presume) and @Michiel Tack provided by Chalder, Wessely and 2 others.

Link to the letter here: https://journals.sagepub.com/doi/10.1177/01410768211017775?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub 0pubmed


We previously reported on routine clinical outcomes after cognitive behaviour therapy for chronic fatigue syndrome in an NHS clinic.1 We found that fatigue, physical functioning and social adjustment all significantly improved, providing some evidence that results from randomised controlled trials can be extrapolated to everyday clinical settings.

Vink, Vink-Niese2 and Tack3 raised a number of issues with our paper, which we will respond to. Although the NHS clinic sees patients with both chronic fatigue and chronic fatigue syndrome, all patients included in this evaluation met NICE criteria for chronic fatigue syndrome and were assessed by an experienced clinician prior to treatment.

A proportion of scores on the SF-36 physical functioning scale were missing. This was not related to dropout but due to the measure being introduced two years after the other routine outcome data collection had started. However, the sample size was reasonable. We included this measure as it is routinely used in trials of behavioural treatments for chronic fatigue syndrome.

The amount of cognitive behaviour therapy offered was flexible depending on patient need. Those with missing data did not all drop out of therapy. We defined dropout as those who did not complete any measures at discharge and follow-up at three months. As a naturalistic study, we felt it was important to include as many participants as possible. With this in mind, we also chose a statistical approach that manages missing data. Furthermore, we conducted a dropout analysis and were clear about this being a limitation. We acknowledged in the paper that dropouts were more ill at the start. However, this does not detract from the fact that many of those who adhered to the full course of cognitive behaviour therapy for chronic fatigue syndrome saw significant improvements. The fact that improvement occurred for a high percentage of people who completed treatment is a useful observation for patients and clinicians alike.

We do not feel that the use of ‘subjective’ as opposed to ‘objective’ measures is a weakness. Chronic fatigue syndrome remains defined by subjective criteria – namely symptoms, and no ‘objective’ biomarker has been found to date. Even when that happens, we continue to expect that patient-reported outcome measures will remain as important if not more important than objective measures. In the end, clinicians will continue to find there is no substitute to listening to the patient when deciding the success or otherwise of management.

Patients were largely satisfied with cognitive behaviour therapy, with over 90% rating their satisfaction as at least slightly satisfied and 45% as very satisfied. These figures represent all patients who completed self-report measures at discharge and are therefore commensurate with all other reported figures at discharge. Although we did not report patient satisfaction at the follow-up, satisfaction rates remained consistent with rates at discharge.

In conclusion, we disagree with the conclusions of Vink, Vink-Niese and Tack. While some patients do remain disabled, significant improvements with medium effect sizes in self-reported measures is a positive outcome for a large number of patients who are seen in a specialist clinic in the UK.

 

It must take skill to so persistently answer questions that weren’t asked and to ignore those that were.

The BPS advocates seem to have taken up with glee the assertion because ME is defined by self reported symptoms it must be appropriate to research it only with subjective questionnaires.

To parody, this logic seems to be based on the syllogism

• ME/CFS is only observable as self reported symptoms
• CBT results in improvement in self reported questionnaires with ME/CFS
• therefore CBT causes improvement in ME/CFS

I would assert there are profound problems at each step of this argument.

I would argue that though there are no agreed diagnostic clinical tests it does not mean that an ME is diagnosis is based purely on subjective self reported symptoms. It is an objective fact that my activity levels are at between 10 and 20% of what they were premorbidly, it is an objective fact that when I eat sufficient food containing gluten I will develop a migraine that leads to vomiting and explosive diarrhoea, it is an objective fact that if I try to walk five miles all my other symptoms, including measurable things such as my digit span would significantly worsen the next day. These are all potentially independently verifiable observations. Also it is not the patient’s fault that that currently the available clinical tests such as a tilt table test or the two day exercise test (sorry forgotten what is called) are not routinely undertaken. Fortunately in some clinics we are seeing hints of change in relation to Long Covid.

It is the BPS researchers that choose to define ME/CFS in terms of their own often problematic self reported questionnaires scores not most diagnosticians or patients. ME is diagnosed on the basis of specific patterns of concrete symptoms in the absence of other conditions sufficient to explain those symptoms, so for example a test indicating an under active thyroid is sufficient to question the diagnosis of ME, but not sufficient to rule it out if key symptoms persist after thyroxin levels are correct.

That is not to say that there are not problems with the current diagnostic processes and worrying levels of misdiagnosis, both false negatives and false positives. This study uses the NICE definition of ME/CFS which is not itself uncontentious. There are grounds for using this in studies of the UK specialist services as that is the definition those services use, but this is not a study of those services it is a study of the efficacy of CBT in ME/CFS, so any objective researcher would want to be certain that their subjects met more than just the NICE criteria.

I believe that the authors’ assertion that ME/CFS, as currently we understand it, is a subjective phenomenon only accessible through questionnaires represents a failure to understand the condition as it clinically presents, and reflects their personal obsession with a psychogenic origin and/or maintenance. Surely the purpose of any intervention is to make objective improvements in patients lives, which can simply be measured by such as hours in education and/or paid employment, activity levels, time able to be upright, etc. That these generally show no benefit from BPS based interventions, indeed there is some evidence that on such measures people that go through the current UK specialist services ultimately get worse on these measure, should lead us to question the motives of those that repeatedly rely only on these questionnaire outcomes.

However even if one accepted that it is valid to measure ME/CFS on only purely subjective questionnaires, this does not overcome the problem of potential bias in using subjective measures in open label trials. Even if ME/CFS is a purely subjective phenomenon, this does not exclude the possibility of improvement on questionnaires being down to experimental bias and no change in the underlying condition. That any self reported advantage over ‘treatment as usual’ controls regularly disappears on long term follow up is surely strong evidence for the presence of experimental bias. Any researcher worth their salt would want some independent means of eliminated this potential source of bias, either through objective measures or converging evidence from other sources, rather than endless reiteration of the same fallible methodology.

[corrected some typos]

 

Does not address any of the flaws. Once more the editors are simply AWOL.

 

How you can manipulate language .

In the abstract from the original paper:

In the response:

Common usage understanding of "satisfied" is not at all the same as what will be commonly understood by "slightly satisfied". When scientists stoop to this pathetic misrepresentation of their findings, it just highlights how bankrupt their credibility as scientists is. Spin should have no place in scientific papers.

 

Outside of surveys, is there any such term as 'slightly satisfied'?

Thinking about the meaning of the word 'satisfied' and what it means, is there any way that the phase 'slightly satisfied' could have any meaning whatsoever?

Or is it like 'slightly decapitated', or maybe 'slightly burnt to ashes' where the words simply do not belong together, at all, ever.

 

"At least slightly satisfied" sounds like a way of rebranding dissatisfaction. Conversely, anyone wanting a negative result could have added "at least one minor quibble" to their questionnaire and then say 90% had at least some reservations about their treatment.

It's pathetic. How can this even masquerade as science?

 

... is the big question. How indeed.

 

Yes, I seem to think that it was only on a survey I first encountered this, and have always felt it to be very contrived.

 

I wonder how many doctors think that paper provides the sort of evidence that matters for clinical practice?

 

I am sure this is going to be brought to the NICE roundtable meeting by certain Royal Colleges as 'evidence' to support their case.

 

What is meant by this?

I found this:

"Naturalistic study: A type of study in which the researcher very carefully observes and records some behavior or phenomenon, sometimes over a prolonged period, in its natural setting while interfering as little as possible with the subjects or phenomena.

In medical research, a naturalistic study usually involves observing people as they go about their normal activities. The presence of an observer obviously has an effect as one goes about one's daily activities."
(My bold)

Is this how the study was done?