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

Don’t be ashamed, BACME are something of a closed shop, as @Trish ’s attempts to establish opportunities for non clinicians to attend today illustrate and they are not necessarily committed to patient engagement as can be seen by @sarahtyson taking her ball home when challenged in the thread on her MEA funded research.

 

Open Letter to BACME:
https://organise.network/actions/petition-an-open-letter-to-anna-gregorow-Nks6ZAJG

Sorry if this has already been shared, am brainfoggy but tried to look through this thread and couldn’t find any mention.

 

Glad to see the wilderness / wildlife nonsense has disappeared This had been on my mind and would have liked the opportunity to say a few words but alas I wasn't able to view/join as I'm quite poorly with other medical muppetry this week

I see the addition of folks like Dr David Strain and so forth to. Good to see.

 

I wasn’t fully won over on Nina Muirhead training stuff, but I can’t remember why that was, so don’t know if that’s a demand I’d make or not. If I was writing to members of the medical establishment because they’d demonstrated that they didn’t give a toss about what patients preferred, I think I’d point to ME/CFS being the terms used by other establishment bodies (as it happens much more significant than themselves) because that’s gonna be more of a problem for them than a patient perspective. But that said I can see the utility in pointing out that they’ve deliberately chosen not to go with the term that patients prefer, despite this making them look outdated and out of step.

Quibbles out the way, congratulations to who ever wrote this much needed letter up! I thought it was really well done keeping it so short but getting the general points across.

 

Great comment @Trish!
Might you share it here?

I found the others comments there so powerful too, what is at stake

 

Oh no! So frustrating to lose your work. But I think this one’s great.

 

So in the presentation Chris Ponting is explaining the patient involvement in amending a particular question wording, because PEM is worsening of various symptoms, not “worsening of fatigue” as the 2021 BACME document says….shows the doc on screen
As the young people say - mic drop/shade/burn etc



18/5/24 5.10pm BST

here I add the actual words from the transcript @JohnTheJack did

 

And most decode me participants found CBT unhelpful and GET

And that’s the end of the presentation.

 

BACME: They were actually saying boo-urns!

 

Did wonder what the Prof would be saying about the community she encountered here. Hopefully she has reflected on it all in a more positive light when she has spent time with her ball.

 

I wonder how Chris Ponting' s presentation went down .
Will it have any effect ?
The fact that it's been given publicly, and made public means there is no excuse for ignorance

 

I doubt that many, if any other presentations will be available. I guess AfMe may be able to obtain some slides or info from Chris Strain's talk on e-learning.
Secrecy, from patients has been their way since inception.

 

In contrast, from the DecodeME transcript above:

 

2024 conference programme (apologies if a repeat):
https://bacme.info/wp-content/uploads/2022/08/Programme_final2.pdf