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

I wondered what information they had to impart and whether they are better informed than we are. If they are , what is the source of the information.

 

It has passed, Trish. It was last night. I agree that it would be good to have someone from our community attend these meetings, or even join BACME.

 

Apologies - only just seen this.
We have collectively made a decision not to join BACME previously and having reviewed that, the decision still stands! So I am not sure we would actually have been able to register!

 

BACME is in the process of changing their name (whilst maintaining their acronym) to the 'British Association of Clinicians in ME/CFS', which I think is a small but positive step. This is now reflected in the text on their homepage (under 'Who Are We?'), though much of the material on the site will still use the old name.

https://www.bacme.info/#about

 

Next BACME event: Journal Club: Hartle, M.; Bateman, L. and Vernon, S.D. (2021) Dissecting the nature of post-exertional malaise.

https://www.bacme.info/civicrm/event/info?id=20

 

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 :-/

 

It's discussed here, Dissecting the nature of post-exertional malaise, Hartle et al, 2021

 

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 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.

 

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.

 

National Lottery Award: 10,000 pounds to BACME to create new website

https://www.bacme.info/sites/bacme.info/files/BACME Lottery Fund Press release Feb 2022.pdf

via Marc-Alexander Fluks

 

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.

 

British Association of Clinicians in ME/CFS (BACME) is developing 3 new Advisory Groups as part of its Patient and Public Involvement commitment.