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

[Suffolkres]

It's an excellent letter. Thank you to all involved. As BACME are a charity is it with considering adapting this as a complaint to the charity commission?

British Association of Clinicians in ME/CFS (BACME) - Charity 1193035

Charity details for British Association of Clinicians in ME/CFS (BACME) - Charity 1193035

register-of-charities.charitycommission.gov.uk

Exactly, as former longstanding of BACME former volunteers Trustees look to be moving on, like Ceri Rutter...

Time to put their narrative straight.. ??

They are a trade organisation for HCPs, to serve members, not to embrace 'Lived Experience' not patients or their carers!!!

That goes against co production principles enshrined in the 2014 Care Act!

 

[Sparkly Unicorn]

Exactly, as former longstanding of BACME former volunteers Trustees look to be moving on, like Ceri Rutter...

Time to put their narrative straight.. ??

They are a trade organisation for HCPs, to serve members, to embrace 'Lived Experience' not patients or their carers!!!

That goes against co production principles enshrined in the 2014 Care Act!

I heard Anna Gregorowski was moving on?! But it might just be rumour. It seriously needs to fall apart. They just can't seem to realise they are actively harming people - and are stuck in some weird wishy washy faux compassion of 'helping' people 'holistically'

 

[Sean]

Thinking more on the dysregulation and rehabilitation model and the way it’s used by some, you could apply this to just about any illness. It seems to speak of a mindset beyond ME/CFS that any illness can be seen as a physiological or psychological state performing outside its ‘normal’ parameters or range and rehabilitation as the attempt to return it to that normality. It’s incredibly broad, quite vague and all encompassing.

Deliberately so. They are attempting to claim all medical conditions as their turf under the guise of their 'transdiagnostic' scam. It is nothing more than a massive brazen power grab, with no justification at all, and massive costs to patients and broader society.

it has become very clear to me that the problem is far more intricate than merely "lack of energy". It is very much about patterns of energy availability with respect to things such as time, energy expenditure, sleep patterns.

I curse the day that ME/CFS was cast as an energy/fatigue problem. Nothing has done more damage and retarded progress more effectively than this framing. It's only equal in harm is the psychosomatic/psycho-behavioural framing, and they are closely intertwined.

Is it no obvious to these people that for most of us with ME the first thing we tried when we got sick, before ever hearing the name ME or CFS, was exercise? That our worlds got progressively smaller the more we tried to “rehab” ourselves?. That many of us were already experts in fitness or working out and knew a bit about how to rest, then take things slowly to try and gradually come out of this, and yet, it still failed? People are not stupid. The first thing anyone tries is go for a short walk, try to slowly increase, ok that failed so let’s try isometric exercises. Ok that failed, maybe I cannot do physical rehab but could do breathing / brain rehab.. ok, no that failed. Ah I have a disease where you cannot rehab out of it bc I am really seriously ill and need an actual medical therapeutic intervention. This is the first few years of every patients disease process and thinking. It is astonishing that they think they can lecture us on rehabilitation.

These guys are the gold medal champions of sheer chutzpah. The level of arrogance and sense of superiority required to believe that they know what they are doing, and have the right – nay, the duty – to keep right imposing it upon us, is just breathtaking.