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

Old Monkey said:
I had never even heard of BACME until yesterday
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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.
 
Old Monkey said:
Is anyone in this discussion attending today's meeting? If so, it would be wonderful if you could download or screen-capture the presentations so the rest of us can see what BACME is sharing.

As a carer for a young person with ME, I am desperately fighting to avoid the deconditioning and other harmful nonsense that passes for "therapy" these days. I had never even heard of BACME until yesterday (I'm ashamed to say) so playing a bit of catch-up here and hoping to get as much information as possible in our struggle.
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I share your concern, @Old Monkey, it's a steep learning curve for all of us when we first come across the harmful nonsense that has been inflicted on us. I hope you can avoid the nonsensical deconditioning 'therapy' being imposed on your young caree. The NICE guidelines specifically say therapy should not be based on increasing activity based on a deconditioning hypothesis.
I'm currently watching some of the Unite to Fight conference. At least one speaker has made it clear that there is definitive evidence that ME/CFS and LC are not caused by deconditioning, and that exercise based therapy is harmful.
 
MEMarge said:
Further info about the conference, including participant bios:

https://bacme.info/wp-content/uploads/2022/08/Programme_final2.pdf


Looks as though wilderness adventures is no longer there...
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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 :wtf:

I see the addition of folks like Dr David Strain and so forth to. Good to see.
 
Yann04 said:
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.
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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.
 
Ash said:
Great comment @Trish!
Might you share it here?
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I asked if people with ME/CFS could attend the BACME conference happening today, 16th May. The answer, without explanation or justification, was no. This is such an outdated attitude. Contrast with the exciting collaborative conference happening at the same time on 15th and 16th May. Unite to Fight will post all their conference talks by scientists, clinicans and people with Long Covid and ME/CFS on YouTube. I think all BACME members should make the time to watch all those talks. And BACME should show some goodwill by posting all your conference talks on YouTube too. There is no excuse for clinicans to discuss our disease behind closed doors. It gives the strong impression you have something to hide. That is unacceptable.

BACME appears to be clinging to outdated ideas about ME/CFS, and about how to communicate with people with ME/CFS. Your members are part of the problem if you don't take on board fully the dreadful harm your members have been perpetuating under the old NICE guidelines for decades. Until you face up to that, and truly update your scientific knowledge, and are open to treating pwME as equals, you will continue to do harm.
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I had written a longer comment including stuff about pacing-up, but it failed to register and I'd forgotten to save it, so I had to start again.
 
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
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18/5/24 5.10pm BST

here I add the actual words from the transcript @JohnTheJack didIMG_2604.jpeg
 
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BACME: They were actually saying boo-urns!
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Peter Trewhitt said:
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.
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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.
 
Old Monkey said:
Thanks for sharing this. If anyone has other pre-recorded sessions please share them. We need to know what is being said in these meetings, to prepare our strategies and stay sane.
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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:

I know we said this many times, but it really bears repeating: patient and public involvement. PPI is at the heart of everything that we do in DecodeME.

Every person, irrespective of whether they are a researcher or someone with lived experience of ME, participates equally in every decision.

So this has, we believe, instilled a lot of trust. And also definitely has enhanced the science.

(07:41) For example, because the questions we ask the community are are better-framed and more often understood by more people.
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:emoji_clap:
 
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