United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

Goodnes i hope that paper is a useful one otherwise they will all be going up a blind alley. They can learn about the nature of PEM from their patients, but of course the patients voice about their own expeiernce isnt as credible as a published paper on it :-/
 
I don't understand what the goal of such an organization is supposed to be. It's not a professional organization in the sense of representing the discipline, there is no such discipline yet and these people would not play a role in this or have anything to contribute. They do not represent significant (or frankly any) expertise and they basically have zero achievements of any kind while having been an irrelevant force for denial of the disease they don't believe in and want to... do something about. Work in it, I guess.

Other than being a lobby group promoting their interest, what is even the point? Just a club for self-promotion?
 
I disagree. It makes sense to me for people who work with specific groups of patients to form an organisation to share the latest on good practice and discuss how best to help their patients.
The problems arise when they listen to and spread the word about quackery.
 
Trish said:
I disagree. It makes sense to me for people who work with specific groups of patients to form an organisation to share the latest on good practice and discuss how best to help their patients.
The problems arise when they listen to and spread the word about quackery.
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I agree. I think BACME could be a worthwhile organisation *if they get it right*. BACME is the only form of central orgsanisation within the NHS system for ME/CFS patients as all the clinics and specialist services are individual entities commissioned by local CCGs and run by individual trusts. They are in a unique position in which enacting change could lead to tangible improvements for patients in the clinics in the short term.
 
InitialConditions said:
I agree. I think BACME could be a worthwhile organisation *if they get it right*.
Click to expand...
That's my issue here. If they do a 180 turn, it's a great thing. Well, mostly useless but it's not bad and in our context it's basically the same as good. But they haven't done that. Right now they are like a former HIV denying group who is trying to be legitimate about AIDS, while not saying much about their HIV denying years.

We know how constant rebranding is a core feature of psychosomatic ideology. It's one thing to be wrong, it's a whole other to be this wrong and pretend otherwise.
 
I have seen no evidence they have changed anything from promoting the BPS model beyond some light rebranding, which is a typical BPS strategy. Or that they have done anything useful ever. They used to be bad, they haven't changed. I simply haven't seen anything to suggest they have anything to contribute.

Not that it matters, I just don't even see the point of this organization. They were part of a massive failure that is ongoing. If they're sincere, they would make efforts to undo that failure. They're not, at least not publicly.
 
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I see BACME classes ME/CFS as a 'fatigue condition' and lump us in with other fatigue conditions. They see their role as 'clinically effective practice in the field of fatigue management'.

Too bad about all our other symptoms, and no mention of PEM. Not good enough BACME.

They also say about research:

The dynamic nature of the illness makes it a difficult condition to research using conventional scientific methods and people with ME/CFS require comprehensive support to enable them to learn how to manage their illness.

So we don't get real science, just more of the same make it up as you go along disguised as personalised treatment.

And not a mention anywhere about educating their members about the new NICE guideline, and this being a reason for the need for their new website.
 
The name change is much less inclusive of the patient perspective, isn't it? At least the old version allowed for collaboration between clinicians and patients, even if that never actually happened in practice.

The clinicians might argue that they need a professional domain, but ME is a very particular and peculiar case. Almost nothing is known about it, so they have almost nothing to discuss as expert clinicians—they won't get far without expert patients.
 
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