BACME: Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), Oct 2020

This

 

As @Trish said, to some extent. Many others will be left feeling guilty, shamed and inadequate. The damage to their confidence and self esteem will, in all likelihood, lead many of them to keep their mouths shut.

Not only is directive CBT very effective at changing how some people fill in a questionnaire there is no doubt in my mind that it is equally effective at silencing some who have been harmed by it.

Those people may have missed filling in patient surveys if they have withdrawn from contact with the ME community in the mistaken belief that this therapy works for most people and most people recover.

Edit - added a missing word.

 

they now have updated versions of a couple of info sheets
BACME: ME/CFS Guide to Therapy October 2020
https://www.bacme.info/sites/bacme.info/files/BACME Guide to Therapy October 2020.pdf

and
ME/CFS Guide to Symptom Management
October 2020
https://www.bacme.info/sites/bacme.info/files/BACME Guide to Symptom Management October 2020.pdf

also available thro their website:
https://www.bacme.info/

 

So this seems to be GET without calling it GET and the same old desensitisation theory without calling it the same old theory.
The recommendations are not based on theory but based on sort of theory. The procedures are not defined tested procedures but undefined untested procedures.

It becomes about as meaningful as the lightening process.

One odd thing is that it says that patients prefer an interdisciplinary approach because it means seeing fewer people - which is odd since an interdisciplinary approach involves more people.

I have a sneaking feeling that this is a bid by the physiotherapists to take over all the interdisciplinary roles themselves - which is why they come first in the list. I think having a single health professional covering the management makes a lot of sense but I do not see why it should be a physiotherapist.

 

from 2013 JB explains exercise

https://www.talkhealthpartnership.com/forum/viewtopic.php?f=490&t=4604