Graded Exercise Therapy for Patients with Chronic Fatigue Syndrome in Secondary care: a benchmarking study, 2021, Smakowski, Chalder et al

Andy

Andy

Senior Member (Voting rights)
Abstract

Objective
We investigated the effectiveness of Graded Exercise Therapy (GET) delivered to patients with Chronic Fatigue Syndrome (CFS/ME) in a routine, specialist clinic by measuring patient-reported outcome data collected prospectively over several timepoints alongside therapy. Benchmarking analyses were used to compare our results with those found in randomized control trials (RCTs).

Method
Data was collected from patients, with a diagnosis of CFS/ME, who had been referred to a specialist clinical service in South London. Measures included Chalder fatigue questionnaire, physical functioning subscale of the short-form health questionnaire and the work and social adjustment scale. Change on each measure was calculated over time using linear mixed-model analyses. Within group effect sizes were calculated and compared with previous RCT’s.

Results
Fatigue scores were significantly reduced by session 4 (-5.18, 95%CIs -7.90, -2.45) and at follow-up (-4.73, 95%CIs -7.60, -1.85). Work and social adjustment and physical functioning progressively improved over the course of therapy, reaching significance at discharge and maintained at follow-up (WSAS -4.97, 95%CIs -7.97, -1.97; SF-36 10.75, 95%CIs 2.19, 19.31).

Conclusions
GET is an effective treatment for CFS/ME within clinical practice. However, effect sizes were smaller in routine clinical practice than RCT’s suggesting that avenues for augmentation need to be considered.

Abstract only, https://kclpure.kcl.ac.uk/portal/en...re(fbd405e8-ae37-4690-9e75-54b3052690f4).html
 
Is this frantic press of ever poorer quality BPS papers a desperate attempt to overwhelm service commissioners before the publication of the final NICE guidelines, even though they must know it is too late to influence the guidelines themselves; is it part of their bid to colonise Long Covid; or are they trying to convince themselves and their acolytes that there is still some scientific basis for their beliefs, despite increasingly losing the arguments over the validity of research methodologies relying solely on experimental slight of hand and manipulation of bias within subjective outcomes?

Though I have little faith in the British medical and scientific establishment not to be swayed by the eminence of the handful of venerated professors still in attendance at the altar of GET and CBT, hopefully this endless repetition of the same flawed methodologies will eventually serve to undermine their proselytising.
 
Interestingly, though Crawley in Bristol/Bath seems to be switching to research involving children with ongoing problems following their intervention, reported as successful with 95% of patients (if I remember the figures correctly), Chalder in London still seems to have enough patients to research on first time round.

Does this mean that Crawley is beginning to realise that on objective measures the UK specialist services are failing to achieve the cure rates they believed to be possible, but Chalder is not? Or is Crawley [beginning] to hedge her bets, where as Chalder is just doubling down on the same old same old?
 
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Tom Kindlon's tweet said:
No control group
Open label trial
No objective measures despite this being a trial of exercise
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Which are alone more than sufficient to make the paper not convincing. Of course most people referred to the clinics will improve over time as the illness takes its natural course.

But, we could add (with respect to the abstract):
  • No mention of dropouts
  • No mention of harms
  • No accounting for the problems with the Chalder Fatigue Questionnaire that make it easy for improvements to be recorded when an outcome actually stays the same
  • Possibility of additional outcomes that were not reported
Abstract said:
Measures included Chalder fatigue questionnaire, physical functioning subscale of the short-form health questionnaire and the work and social adjustment scale.
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These papers are not science, they are propaganda. Chalder and her acolytes are not scientists.
 
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Peter Trewhitt said:
Is this frantic press of ever poorer quality BPS papers a desperate attempt to overwhelm service commissioners before the publication of the final NICE guidelines, even though they must know it is too late to influence the guidelines themselves; is it part of their bid to colonise Long Covid; or are they trying to convince themselves and their acolytes that there is still some scientific basis for their beliefs, despite increasingly losing the arguments over the validity of research methodologies relying solely on experimental slight of hand and manipulation of bias within subjective outcomes?

Though I have little faith in the British medical and scientific establishment not to be swayed by the eminence of the handful of venerated professors still in attendance at the altar of GET and CBT, hopefully this endless repetition of the same flawed methodologies will eventually serve to undermine their proselytising.
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Yes, indeed.
 
Peter Trewhitt said:
Is this frantic press of ever poorer quality BPS papers a desperate attempt to overwhelm service commissioners before the publication of the final NICE guidelines, even though they must know it is too late to influence the guidelines themselves
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Having seen the rules for what evidence will be reviewed for the forthcoming German ME/CFS Guideline, I think the BPS crowd know that the war to retain control consists of many battles.
 
Trudie Chalder said:
In the UK, the prevalence of clinically confirmed chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) has been estimated to affect over 500 000 people (0.76% of the population)
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Yet again conflating ME with chronic fatigue and inflating the numbers. There's no way that many people in the UK have real ME. Typical BPS tactic.
Trudie Chalder said:
Measures included Chalder Fatigue Questionnaire, Physical Functioning Subscale of the Short-Form Health Questionnaire, and the Work and Social Adjustment Scale.
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Yet more useless scales which don't measure PEM or even require it in the CDC 94 criteria. Open label study with no objective outcome measures.
 
This is pretty bad. And again Chalder is making claims that these findings demonstrate "effectiveness" while claiming that the study design does not allow for causal explanations. To claim something is "effective" is making a causal claim. She has documented an association between people who receive GET and a proportion of those who report that they feel better. That is not demonstrating "effectiveness." it is demonstrating a chronological association which might mean something or might not. To her, it seems every association is an opportunity to claim causality.
 
Trial By Error: More Science-as-Promotion from the GET Campaigners

"Perhaps Professor Chalder and her colleagues believe that the volume of studies confers some sort of credibility on the content. That strategy might work in some cases, but not when the research is as misleading as the GET propaganda Professor Chalder and colleagues published in July in the journal Disability and Rehabilitation. (This publication comes after, among other instances, Professor Chalder’s misleading CBT paper last fall in the Journal of the Royal Society of Medicine, to which Professor Brian Hughes and I published a rejoinder; and Professor White’s misleading GET paper in the Journal of Psychosomatic Research, which was corrected to make it clear that the study had null results.)"

https://www.virology.ws/2021/09/14/...cience-as-promotion-from-the-get-campaigners/
 
dave30th said:
To her, it seems every association is an opportunity to claim causality.
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I do sometimes wonder if they really have the scientific nous to distinguish between the two. As if to them it is "so obvious" the relationship must be causal ... they just get mental dropouts of those rather important bits of scientific reasoning along the way. It's bordering on weird.
 
Some of the figures are interesting
Graded exercise therapy for patients with chronic fatigue syndrome in secondary care – a benchmarkin (tandfonline.com)

Number of patients coming into the clinic 1506
1240 had CBT (note that in PLOS ONE: Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis its said that Maudsley is charging 176 per hour which for 12 sessions per patient would give them a revenue of £2618880)
6 - had APT
60 had both GET and CBT (so weren't included)
83 - they failed to record what they had (~5% they didn't record treatment which implies poor record keeping!)

So 117 patients just had GE
- 12 were discounted for post-polio, cancer or other illnesses that could cause symptoms
- 12 more excluded due to missing initial or invalid data
- 1 had had GET before

So they looked at 92 patients
- 1 discontinied
- 20 "completed treatment early" with no outcome measures (in other words dropped out)
So figures are for 71 patients who completed

They also imputted data when 25% or less was missing which I think is more than normal

I thought it is interesting they do less than 10% GET but then I think Kings was pushing CBT with QMUL GET. But it doesn't suggest great confidence or that it is helping that many. We could perhaps compare these numbers to patient harms reports
 
Moved post

David Tuller Sept 14 2021
Professor Trudie Chalder, Professor Peter White and like-minded members of the CBT/GET ideological brigades have appeared desperate in the last year to promote their favored interventions, publishing one shoddy paper after another. This stream of sewage has seemed intended to influence the new ME/CFS clinical guidelines that Britain’s National Institute for Health and Care Excellence (NICE) has been developing since 2017. NICE called off the scheduled August 18th publication of the new guidelines, which formally reject the longstanding treatment paradigm for ME/CFS, because of fierce objections from the cabal of CBT/GET true believers.

High-profile researchers like Professor Chalder and Professor White continue to mislead readers and tart up pathetic findings from both randomized trials and clinical services. Patients long ago recognized that this research base is a mountain of hooey. In recent years, that clear-eyed perspective has become more widely adopted. It is not surprising that NICE now finds itself squeezed between the actual evidence on one side and the braying of eminent pooh-bahs on the other—that’s what happens when paradigms undergo major shifts.

Those on the losing end of the scientific argument—in this case the CBT/GET cabal—are exquisitely aware of their deteriorating position. They know that the new NICE guidelines will have a negative impact on their reputations and ambitions. It is easy to understand why they are so motivated to prevent NICE from publishing the guidelines in their current form.
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https://www.virology.ws/2021/09/14/...cience-as-promotion-from-the-get-campaigners/
 
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