Review Does the effect of CBT for CFS (ME/CFS) vary by patient characteristics? A systematic review and individual patient data meta-analysis, 2023, Knoop

cassava7 said:
the authors can simply claim that the participants did have PEM at the time that they were recruited (and not retrospectively) based on their clinical assessment, i.e. whether they responded that they experienced “postexertional malaise lasting more than 24 hours”.
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Yes I think that it is what happened: they recorded the data on PEM to assess the Fukuda criteria but I'm not sure what exact question they used. Based on the supplementary material it might have simply been: "do you have an increase of symptoms following exertion?"
 
ME/CFS Skeptic said:
Yes I think that it is what happened: they recorded the data on PEM to assess the Fukuda criteria but I'm not sure what exact question they used. Based on the supplementary material it might have simply been: "do you have an increase of symptoms following exertion?"
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It should also be noted that if this is indeed how PEM was evaluated, then the authors cannot infer from it that patients who met the Fukuda criteria with PEM also met the NICE and IOM criteria for PEM, because the latter define PEM more stringently:

Fukuda:
(…) must have persisted or recurred during 6 or more consecutive months of illness and must not have predated the fatigue: […] postexertional malaise lasting for more than 24 hours
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However, confusingly, the algorithm diagram in the Fukuda paper only requires “postexertion malaise” without a time requirement (Fig. 2).

IOM:
Post-exertional malaise (PEM)*—worsening of symptoms after physical, mental, or emotional exertion that would not have caused a problem before the illness. PEM often puts the patient in relapse that may last days, weeks, or even longer. For some patients, sensory overload (light and sound) can induce PEM. The symptoms typically get worse 12 to 48 hours after the activity or exposure and can last for days or even weeks.”

* The frequency and severity of these symptoms need to be evaluated. The IOM committee specified that “The diagnosis of ME/CFS should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity.”
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NICE 2021:
Post-exertional malaise after activity in which the worsening of symptoms:

- is often delayed in onset by hours or days

- is disproportionate to the activity

- has a prolonged recovery time that may last hours, days, weeks or longer
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Further detailed in the glossary:
Post-exertional malaise

The worsening of symptoms that can follow minimal cognitive, physical, emotional or social activity, or activity that could previously be tolerated. Symptoms can typically worsen 12 to 48 hours after activity and last for days or even weeks, sometimes leading to a relapse. Post-exertional malaise may also be referred to as post-exertional symptom exacerbation.

Relapse

A sustained and marked exacerbation of symptoms lasting longer than a flare‑up and needing a substantial and sustained adjustment to the person's energy management. It may not be clear in the early stages of a symptom exacerbation whether it is a flare‑up or a relapse. Relapses can lead to a long-term reduction in the person's energy limits.

Flare-up

A worsening of symptoms, more than would be accounted for by normal day-to-day variation, that affects the person's ability to perform their usual activities. Flare‑ups may occur spontaneously or be triggered by another illness, overexertion or other triggers. Flare‑ups usually occur as part of post-exertional malaise but it is possible for other symptoms, such as pain, to flare-up without post-exertional malaise. The worsening of symptoms is transient and flare‑ups typically resolve after a few days, either spontaneously or in response to temporary changes in energy management or a change in treatment. A relapse lasts longer than a flare‑up.
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Andy said:
For some reason a UK mental health charity, SANE, has shared this on Twitter.
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Decided to reply to this -
[Replying to @CharitySANE and @KingsCollegeLon]
"Flogging a dead horse - NICE reviewed non-pharmaceutical interventions like CBT and found the evidence low/very low quality. If you actually believe in this then run some proper studies - i.e. objective outcome criteria like return to work."

 
Secondary outcomes
Functional impairment was assessed with the Sickness Impact Profile 8 (SIP8) (Bergner, Bobbitt, Carter, & Gilson, Reference Bergner, Bobbitt, Carter and Gilson1981), which assesses overall impairment in eight domains. A higher weighted total score indicates more severe overall impairment. Physical functioning was assessed with the subscale physical functioning of the SF–36 (Stewart, Hays, & Ware, Reference Stewart, Hays and Ware1988). The weighted subscale score ranges from 0 (maximum physical limitations) to 100 (ability to do vigorous activity).
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Why do these people think that I give a rat's f*** about what bubble I fill in on a questionnaire?! What I care about is, how much time can I spend out of bed? Can I take a bath on my own? Can I clean my own home? Can I leave my home? Can I work? They believe this whole thing is a game with subscales and domains which they dutifully score and believe they are playing an honest game honestly. We, of course, are not playing that game. Nor are any of the guideline committees.

I sense this is part of a larger problem within society as whole: the use of metrics as a tool to make life better vs. the use of metrics as an end in and of itself because it's a quick hit of external validation (and career advancement)--especially if you get to create the metrics!
 
Andy said:
UK mental health charity, SANE
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the only reference to CFS I can find on their website (I haven't searched very thoroughly) is this members blog:
My chronic fatigue journey
Again I am reminded of my mental health experience. I entered the Priory believing that I was broken and unfixable but left understanding the power of the CBT cycle, that thoughts influence feelings, influence behaviour. Make a change, breaking the cycle, and you can begin the journey of recovery.

And so it is with CFS. My tiredness will not be addressed by an early night or a lie in. Instead I must map out my day, stick to a routine and make time for genuine moments of relaxation. My pain will never be cured by co-codamol, however much short-term relief they may provide. Instead I must look to establish a sensible, graded exercise regime, supported by mindfulness and with a focus on breathing exercises.
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https://www.sane.org.uk/how-we-help/sane-community/your-blogs/my-chronic-fatigue-journey

curiously the link to the writers 'ongoing journey' takes you to a wordpress site that has been deleted by the author.
 
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Patients with chronic fatigue syndrome benefit from cognitive behavior therapy
Researchers from Amsterdam UMC and King's College London have shown that Cognitive Behavioral Therapy (CBT) is beneficial for those with ME/CFS. They analyzed data from trials involving almost 1300 patients and found that CBT led to a reduction in fatigue and physical limitations. These results are published today in Psychological Medicine.
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https://www.news-medical.net/news/2...-benefit-from-cognitive-behavior-therapy.aspx

you can rate the article (so far it has 1 star)
 
I can imagine similar studies coming in the next months/years from other well known BPS researcher. For example from the UK.

My hope is that we have some proper therapy and biomedical studies when a refresh of the guidelines are due…
 
ME/CFS Skeptic said:
Lack of blinding + subjective outcome measures did not lead to high risk of bias rating.
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did D4 come under this? "bias in measurement of the outcome"? I'm not clear but they all had "some concerns" in that domain. In the text, they seem to justify it as an inherent limitation that's impossible to avoid.
 
Trial By Error: Yet More Stupidity from the Dutch CBT Fan Club

"As I pointed out last month when I reviewed a ridiculous study of “psychosomatic therapy” for “persistent somatic symptoms,” the Dutch psychologizers can’t seem to stop churning out poor-quality research purporting to support claims that their interventions are effective. Before the psychosomatic therapy study was the one investigating cognitive behavior therapy (CBT) for fatigue associated with long Covid, in which the authors declared success but failed to disclose that they had null results for their one objective measure—how far participants moved, as assessed by actigraphy.

Now we have another study of this ilk, this time a meta-analysis of individual patient data from a batch of studies of CBT for ME/CFS: “Does the effect of cognitive behavior therapy for chronic fatigue syndrome (ME/CFS) vary by patient characteristics? A systematic review and individual patient data meta-analysis.” The lead and senior authors are the same as for the recent study of CBT for long Covid –Dr Tanja Kuut and Professor Hans Knoop, both from the University of Amsterdam.

The new meta-analysis was published by Psychological Medicine, a journal that is essentially an in-house publication for the stream of shoddy papers emerging from members of the CBT/GET ideological brigades. (The Journal of Psychosomatic Research performs a similar function.) To make it more of an inside job, all eight studies included in the meta-analysis were done by investigators from the same group of researchers that includes Dr Kuut and Professor Knoop."

https://virology.ws/2023/11/11/trial-by-error-yet-more-stupidity-from-the-dutch-cbt-fanatics/
 
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