United Kingdom: Teenager Ella Copley's experience with severe ME/CFS

InitialConditions said:
Not sure if you are aware, but that was BACME's original name until around 2021.
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yes I am aware, and they should be too.
Sly Saint

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

https://www.bacme.info/sites/bacme....modules/image/BACME Annual report Jan2021.pdf

Charity name
British Association for CFS/ME
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Becoming a Charitable Incorporated Organisation on January the 8th 2021
will ensure we can work with services at a more strategic level in more and effective ways.
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From constitution
The relief of sickness for the public benefit by
:
3.1
Championing clinically effective practice in treating
CFS/ME and other primary fatigue conditions
3.2
Disseminating of recent evidence and practice to...
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I think Adam thought of it first!

adambeyoncelowe

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

Ariel said:
This organization will have to change its name - BAMEC?
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Or the British Association of Clinicians for ME/CFS (stays as BACME)?
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and it was 2022 when they changed the name:
InitialConditions

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

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
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MEMarge said:
I also came across this little gem praising the Leeds inpatient treatment for those with CFS, referring to the crass article by Alastair Miller, Garner et al....

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This article seems to be a summary of the Miller et al opinion piece that appeared in the BMJ earlier this year., which we extensively discussed in this thread. It extols the wonders of hope, specialist personalised care and brain retraining without any meaningful evidences, and seeks to undermine the current NICE ME/CFS guidelines.

Certainly this suggests that the Leeds in patient service is not somewhere anyone with severe ME/CFS should go anywhere near.
 
Peter T said:
This article seems to be a summary of the Miller et al opinion piece that appeared in the BMJ earlier this year., which we extensively discussed in this thread. It extols the wonders of hope, specialist personalised care and brain retraining without any meaningful evidences, and seeks to undermine the current NICE ME/CFS guidelines.
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Which makes the fact that they keep being told that it's them and their wretched ideology that kills all hope so much more bizarre. They seem to simply prefer to believe whatever version of reality they want to be true, and it doesn't matter that there are literally tens of thousands of articles, in English news media alone, voicing exactly the opposite of that, that it's them causing the very rational lack of people patients have.

It's all so damn absurd, completely dystopian. They are like multibillionaire aristocrats raving about the virtues of wealth and how the poor should just work harder even as they work to corrupt the system to grab everything for themselves. A level of delusion fully comparable to the most unhinged conspiracy fantasy communities.
 
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