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

Suffolkres said:
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!
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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'
 
hotblack said:
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.
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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.
Barry said:
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.
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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.
Braganca said:
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.
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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.
 
@Jonathan Edwards - Could you please send copies of the letter to

sc-tr.CFSMESussex-WideService@nhs.net The current email address for the NHS Sussex Wide ME/CFS Service.


And to The Sussex and Kent ME/CFS Society

enquiry.sussexmes@btinternet.com

The Sussex ME/CFS Society Medical Advisor who is also apparent lead of the NHS service is Dr Alan Stewart ("was appointed to the post of medical practitioner to the NHS Sussex CFS/ME service at the end of 2012").
And of course Dr Alastair Miller is another Sussex ME/CFS Society Medical Advisor.


measussex.org.uk

Medical Advisers - Sussex & Kent ME/CFS Society

The doctors who advise the Sussex & Kent ME/CFS Society are some of the most qualified and experienced professionals in the field who have assessed and managed those affected by ME/CFS for years. Dr Alan Stewart Dr Alan Stewart qualified in medicine from Guy’s Hospital in 1976 and underwent...
measussex.org.uk measussex.org.uk



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Sean said:
Deliberately ... 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.
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The mind over matter cult can attract people who are averse to pharmaceutical drugs and surgery, and also people who like to blame less fortunate fellows. Its a primitive resurgence. Its just not as if we can all walk on hot coals, lie on a bed of nails and stop breathing for a while.
 
Jonathan Edwards said:
I thought this paragraph from a BACME document was informative:

A Brief History of CFS/ME services within NHS
In May 2003, it was announced that a central budget of £8.5 million would be released to
the NHS in two phases to allow stepped development of CFS/ ME services in England. As
part of this initiative 13 centers and 36 local teams for adult services and 11 specialist teams
for children and young people were set up between 2004 and 2006
(http://www.bacme.info/document_uploads/POD_Docs/CFSMEServInvestProg0406.pdf). These services now form part of the British Association for Chronic Fatigue Syndrome/ ME,
in partnership with patient charities and services that were already established prior to 2004.

We are now left with a structure set up 20 years ago in the middle of the PACE age. This proved to be the wrong model. People with ME/CFS should have continued under physicians as they had before. I think this underlines the error of thinking that 'special', separate 'ME/CFS services' are a good thing. ME/CFS should be treated as an ordinary illness like any other, under physician-run clinics with domiciliary outreach.
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They lie. Our Group predates BACME (1996). Ww approached BACME when we were embroiled in 2022 Service Development for Suffolk.

They were 'interested' ..but refused my request to engage and attend AGM.
 
Jonathan Edwards said:
ME/CFS should be treated as an ordinary illness like any other, under physician-run clinics with domiciliary outreach.
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There are loads of different 'clinics' eg well woman, ltc, cardio-vascular, usually with a nurse. The larger practices could easily run them providing they had the proper information , if only as a monitoring provision. Might patients from other practices be referred? I know dentists do this.
They could also potentially produce useful data.
 
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