EUROPEAN ME NETWORK (EUROMENE) Expert Consensus on the Diagnosis, Service Provision and Care of People with ME/CFS in Europe, 2020, Nacul et al.

This contains the sentence I’m most concerned about in the document:

I think it should say something like “testing to see if the boundaries can be extended”: there is certainly no guarantee they can be. Fortunately, I think this might be the only such wording in the document, with plenty of talk of pacing and the like.

 

Not convinced CBT needed to be mentioned

Ref 67 isn’t a CFS-specific paper. The PACE trial didn’t find long-term benefits from CBT even when assessed by questionnaires.

 

From A professional view on symptom management and relief
Dr. L. Lorusso (personal communication)
(part of Box 11)

Excessive rest is by definition excessive. However, I’m not sure how common it really is.

 

Many of us do this (rest/activity balance) intuitively, by necessity. In general we know our limits, we know when we go beyond our capacities and we know when we have gone too far. It is hard to fathom that in 2023 we are still here, reading scientific papers about activity management, CBT being potentially useful and managing ‘the most distressful symptoms to. ’.

I find this distressing that we are still here and that the best that medicine can do is working on self-management

 

As long as they are good. The English system had clinical champions like the biopsychosocial ideologue, psychiatrist Peter White.

 

There is little talk of the need for physiotherapists/physical therapists in this document which I agree with.
I think you are asking for problems if you have a service involving physiotherapists/physical therapists.

Here is a tweet today that I think shows the typical attitude of physiotherapists/physical therapist to exercise