An Open Letter to BACME re ME/CFS Guide to Therapy 2025

[MrMagoo]

I fear it's the standard BPS/BACME model of acting like they agree with an initiative, getting involved and then turning it into a way to get more rehab bullshit funded.

100% this. It happens. It is happening.

 

[Utsikt]

You'd better read the paper. That's what it said.

I have, and I couldn’t see anything about what a normal or abnormal measurement would be.

The results of this analysis provide some support that individuals’ reports of autonomic symptoms on the DSQ were consistent with objective measures of autonomic symptomatology.

This is all they say. Did I miss something?

Autonomic Dysfunction in Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: Comparing Self-Report and Objective Measures - PMC

pmc.ncbi.nlm.nih.gov

 

[Hutan]

Thanks to the authors, this is wonderful. Special acknowledgement to Michelle Bull - it says a lot about her professional integrity that she does not seek to carve out a core role for physiotherapists in the treatment of ME/CFS. If we had more of that, and less of people with a hammer seeing the world as a nail, we would be so much better off.

There is also some limited evidence that psychobehaviouralism contributes to suicidality; the Tschopp et al. pilot study from 2024 reported that "being told the disease is only psychosomatic was the factor that contributed the most to suicidal thoughts in ME/CFS patients".

Thanks to Nightsong for mentioning this study. I too thought of that Swiss survey to illustrate the point made.
There is a Tschopp 2023 paper, and also a 2024 paper with Tschopp as senior author. I haven't checked the earlier paper, but certainly the second one has the point about BPS ideology contributing to suicidal thoughts.

Forum threads here:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) - a preliminary survey among patients in Switzerland, 2023, Tschopp et al
Identifying the mental health burden in ME/CFS patients in Switzerland - a pilot study, 2024, Konig et al

The finding about the psychological impact of psychosomatic attribution should be up front and centre in the forthcoming British Psychological Society's guidance on providing support for people with ME/CFS.

 

[bobbler]

100% this. It happens. It is happening.

Except the point was also made of not having read the letter properly in the initial lines which seems a bit unusual to say is it (unless it was just a one liner to a friend saying ‘I’ll get to read it at the weekend’ ) and rush to reply so quickly as another few days wouldn’t make a difference to sending this in particular ?

with what seems like a non sequitur response except for it’s a ‘I haven’t even read the letter’ response

And if it isn’t ever to be read in a non parsing way then it seems ironically representative as an issue patients have been experiencing at micro and macro level. I just don’t know as I don’t know the individual and other communications whether when it’s something they find things they agree with in then they are able to read and reply in what if see a normal way or if it’s habit for everything etc. Or culture /style/ways of doing things in profession that I’m not familiar with

I’m not surprised they want support for what they want to d, everyone tends to, but asking for it whilst saying I’ve not heard what you’ve said doesn’t sound like a promising offer - but made to look like an olive branch to put shoe on other foot as if instead of that being uncooperative of not reading and responding somehow the idea might be the hope to give onlookers that turning it down is somehow uncooperative etc

So feels like a game/tactic (I have fencing or chess or something like that in my mind) and perhaps the same m.o. that’s been used before however many times, but that’s of course only based on what I do have experience in/of watching so I’m curious if things are different in medicine/rehab

But it reminds me of the ‘don’t acknowledge the premise of the question’ type thing but this time by finding one point outside the gist to justify the pre-ordained response.

However this might be accidental due to the rush

And
The alternative is it’s a template and somehow it really hasn’t been read and really is just sent to anyone getting in touch just with the odd tweak to ‘personalize’

and if so, when it is read then I’m not sure how it will go down