Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Sly Saint, Oct 18, 2020.
"Further research is needed to better understand the role of pacing in ME/CFS and potential adverse responses to CBT and GET."
I don't understand why we should use precious resources for the latter (my bolding).
Doctors often prescribe or recommend therapies that don't work or cause unwanted side effects, because human bodies are complicated and treatments are often blunt instruments. They note the patient's response and move on. Everyday occurrence.
There's no need for an inquest into this.
That was my reaction too. I don't see any point in simply putting more cohorts of patients through GET again, after multiple trials have shown no objective or long term benefits and multiple surveys have reported high rates of adverse effects. It would surely be unethical to do more trials.
I wonder whether they mean research such as 2day CPET that includes biological studies of the effects of exercise in ME that might reveal why exercise has adverse effects.
I'd like the second kind, although I must admit I would not volunteer to take part in such a study any time soon except on the researcher side.
The data from these studies are incredibly valuable, but I'm not sure we know enough yet to recommend repeating them, specially given the potential for patient harm. I'd welcome it if researchers saw specific phenomena occurring in ex vivo experiments, though, and there was a need for confirmation that could only be obtained in vivo.
I think there could be studies of the harm done by GET which would be very worthwhile if NICE continues to recommend it (or even doesn't come out against it). Currently there is very little in research in that direction - one of the things that those backing GET keep arguing is that its only harmful if done wrongly (and then changing the defn of GET). We have the paper that Graham and others did on looking at how clinics fail to record or look for harm which makes a case that they cannot know what the situation is. But some (independant) research that contacted patents treated with GET in major clinics and gathered their experiences could help reduce the hard caused by GET clinics.
But, it is somewhat a waste of money in that they shouldn't be recommending stuff that has been shown to have no benefit.
Those studies are basically happening as we speak so I don't think there will be a need for it. Most "rehabilitation" programs for Covid are built on this paradigm and many are finding that they have to dramatically change their expectations. In one of the studies they used a program built for 70 year-olds recovering from pneumonia and it was too much even for the young adults, causing crashes.
It will take a few months but GET is currently being put to the test for rehabilitation of post-viral illness / whatchuwantacallit and failing across the board. So I wouldn't worry about that, it's currently happening.
This is data from 2017? I think the results were published here:
Geraghty et al. 2017. Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys. https://journals.sagepub.com/eprint/hWSxVIBTzDtqisvafkhE/full
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