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[CFS-L] NICE have paused the publication of the ME/CFS guideline: Guardian - Letters

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Source: The Guardian
Date:   August 19, 2021
URL:    
https://www.theguardian.com/society/2021/aug/19/pros-and-cons-of-me-therapy


[Letters]

Pros and cons of ME therapy
---------------------------

It is surprising the National Institute for Health and Care Excellence 
(Nice) should even be considering stopping advising doctors to 
administer graded exercise therapy (GET) and cognitive behaviour therapy 
(CBT) in cases of myalgic encephalomyelitis (UK health standards body 
delays new ME guidance in therapy row, 17 August). Those who object to 
these treatments do so on the grounds that the condition is not 
psychological and so should not be treated by psychological methods. In 
fact, ME is caused by a combination of physical and psychological 
factors, the relative importance of each varying between sufferers.

In any case, the principles of GET and CBT are used in undoubtedly 
physical conditions, as in recovery from heart disease and stroke. It is 
true that the use of these therapies sometimes makes things worse in ME, 
but this is the case for many established treatments. In this case, 
though the evidence is not conclusive (it never is), controlled trials 
indicate that benefit outweighs risk. In the absence of strong evidence 
of harm, public bodies should not intervene to stop particular 
treatments but leave clinicians and patients to negotiate together if 
and how to use them.

Prof Philip Graham
Emeritus professor of child psychiatry, University College London

- - - - - - - - - - - - - - - - - - - - - - - - - - - - -
My younger daughter was diagnosed with ME at 14 years of age and is 
still ill. She is now 42. My late wife was diagnosed with it some months 
later and suffered badly until her death in 2019. Because the condition 
is inadequately characterised, it has been a happy hunting ground for 
people offering 'cures'. None of them work. My wife, a psychologist and 
statistician, said those who were well enough to engage with CBT were 
probably on the road to recovery anyway. GET therapy is the last thing 
people with ME need.

My wife and daughter, when they overexerted themselves, faced severe and 
rapid deterioration. To her astonishment, while my wife was undergoing 
chemotherapy, the ME disappeared. It would be difficult to argue that 
cytotoxic drugs would have any influence on an allegedly psychosomatic 
illness. A more likely hypothesis is that the immune system is 
fundamentally involved in the disease. In that case, therapies like GET 
or CBT are unlikely to be of any value, or even possibly damaging, which 
seems to be the rational conclusion of Nice.

Dr John Cookson
Bournemouth

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(c) 2021 Guardian News & Media Limited

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[CFS-L] NICE have paused the publication of the ME/CFS guideline: Guardian - Letters fluks@COMBIDOM.COM (Dr. Marc-Alexander Fluks) - 2021-08-20 01:44 -0700

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