The Role of Psychotherapy in the Care of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome 2023, Grande,Vink,Hughes et al

I wold hate spending any precious money on researching these. Just like for PACE trial, plenty of opportunities for bias, for vested interest, for enrolling fatigued patients and other issues with trial design and interpretations. I am reminded that Reid berg has obtained federal grants for similar topics that were over 1 million $. I would rather the money be spent in finding bio markers and actual treatments.

 

So, in a nutshell they're telling psychotherapists that when pwME turn up in their practice, as inevitably they will whether of their own volition or sent against their wishes by misinformed doctors, then they should not subject those pwME to GET/CBT but instead support their efforts at pacing, understanding PEM and coping with being ill, and they should treat the patient as the expert in their own illness.

That is all good and probably the best we can hope for in the current context. Damage control. Admittedly it's debatable whether psychotherapists are the best-placed people to do this - something along the lines of @Hutan's suggested trial in post #18 would be interesting to do - but since pwME get sent to psychotherapy it's best if at least they strike an ME-educated professional.

Not mentioned in the paper but I've seen a number of pwME report that their psychotherapist was the first person ever to validate their illness as being not psychosomatic. Which can be a non-negligible benefit if a pwME has a misinformed network around them. In that situation it can be helpful to be able to say hey, even my psychotherapist says it's not in my head, I'm not lazy and I have to rest and pace. This could be one situation where a psychotherapist really is more "help" than a community nurse or a patient support group. It's buying credibility by reference to (perceptions of) authority or eminence but sometimes we have to use whatever strategy is available to us to protect ourselves.

Overall I think this is a useful paper in the current context which is sadly still all about minimising harm. Some decent research into what type of support actually works best is long past overdue.

 

The problem here is it depends on what information the pwME was 'fed' to start with, even if they (the therapist) do give some kind of reassurance that the illness is not 'all in their head'.
If it's all about 'boom and bust', setting baselines and trying to get them to think positive thoughts, telling them that this is how the condition needs to be managed then it is highly likely that will frame their answers.

Having someone to talk to and listen and not feeling that you are the only one, and there are others who understand what you are going through is possibly one of the most 'helpful' things at the beginning in particular.
But this needs to be in addition to practical advice and help and if the health professional is not able to do that then directing the pwME to someone who can help.
I got a lot of sympathetic talk from my GP in the first few years but little practical advice.
(I remember telling him that joining AfME (pre internet days) was the most useful thing at the time!! and I made the mistake of believing all the information that they gave members, for 12years).

So until all the misinformation is corrected, standardised and adopted by the main health authorities, the current ad hoc approach to 'treatment' in the guise of 'individualised' treatment plans is wide open to misinterpretation. eg what is pacing.

Also public perception is generally that if you are being 'treated' by a psychotherapist then you must have a mental illness, regardless of the therapist telling you that you don't.

 

This is exactly why, when threatened with being sent to a psychiatrist by one GP because my routine blood tests were always normal although I was seriously physically ill, I nearly took him up on it: I would have said "OK, send me to a psychiatrist. His report will be 'Why have you wasted my time sending this patient to me, she doesn't have a psychological condition!'." But I bit my tongue, because I knew that once a referral to a psychiatrist was in my notes, all subsequent doctors would take note. Even if it said there were no psychological issues found, they would skim over that because it's not what they want to hear. So it's best to just not go there.