The draft updated NICE guidance for ME/CFS highlights the unreliability [...], Vink& Vink-Niese, JoHP 2021

MSEsperanza

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Vink M, Vink-Niese A. The draft updated NICE guidance for ME/CFS highlights the unreliability of subjective outcome measures in non-blinded trials. Journal of Health Psychology. January 2021 (Editorial), doi:10.1177/1359105321990810

https://journals.sagepub.com/doi/full/10.1177/1359105321990810

Abstract
The National Institute for Health and Care Excellence (NICE) recently published its draft updated guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

NICE concluded that ME/CFS is a complex multisystem chronic medical condition for which graded exercise therapy should not be used and cognitive behavioural therapy is only a supportive therapy and not a treatment or cure.

The draft guidance also highlighted the unreliability of subjective outcome measures in non-blinded trials. High quality randomised controlled ME/CFS trials are now needed to find pharmacological treatments that lead to substantial objective improvement and restore the ability to work.
 
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What was found in Jason et al?

The BMJ Dubbo paper said 12% at 6 months and 9% at 12 months. I remember Cort Johnson saying something like he heard (possibly from correspondence with Andrew Lloyd?) the figure was really low at 2 years (I think 1-2%) in Dubbo but I never saw anything about it elsewhere: anyone have any info on it?
 
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I just got around to reading this. I think it is a very useful paper to use to inform health providers that exercise is not 'good for everybody', as Dr Clare Gerada recently pronounced on BBC TV.

It's short and to the point and easily readable, with plenty of links to evidence in support.

Thank you very much @Mark Vink for this valuable and timely work.
 
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