Dialogues ME/CFS
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dialoguesmecfs.bsky.social
Dialogues ME/CFS
@dialoguesmecfs.bsky.social
2K followers 200 following 20 posts
https://www.dialogues-mecfs.co.uk Website with videos created by Natalie Boulton & Josh Biggs with a Wellcome Public Engagement Fund Award. Professionals and patients explain key aspects of #ME/CFS and a longer film explores the wider context and history.
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Reposted by Dialogues ME/CFS
Todd and I also wrote an open letter to the #MECFS community to:
a) share the final version of the draft protocol for the ME/CFS exercise review as submitted to Cochrane in Feb 2023
b) solicit comments as originally promised (2/2)
@sunsopeningband.bsky.social
drive.google.com/file/d/1JK06...
Community Letter re Cochrane Mar 2025.pdf
drive.google.com
March 12, 2025 at 1:08 PM
dialoguesmecfs.bsky.social
December 12, 2024 at 7:43 PM
Reposted by Dialogues ME/CFS
cgatist.bsky.social
Real-world #MEcfs data from Norway highlighting the employment & welfare problems that the UK (& other) Governments need to face up to, and not *ignore* or misrepresent. @gwynnemp.bsky.social
Five important findings of this paper: One: an expectation that people with ME/CFS will fully recover their work life is unrealistic. Two: Health and welfare providers need to be realistic and their actions should not discriminate against the most vulnerable from accessing benefits. Providers might be prolonging the ordeal of pwME. Three: Focusing unduly on returning people to the workplace might hinder interventions aimed at improving life quality. Four: The number of people with ME symptoms is growing because of Long Covid, so this stress the urgency of more evidence based approach to support them. Five: More funding needs to go into research to find a cure. They end by saying "Whereas services and interventions for the group today are costly, they do not, in their current form, appear to have worked to fully rehabilitate more than the exceptional few."
November 15, 2024 at 2:33 PM