United Kingdom: Action for ME (AfME) news

https://twitter.com/user/status/1461702061083484170

More here:UK: Secretary of State for Health and Social Care met with ME/CFS researchers Nov 2021

 

https://twitter.com/user/status/1465652889234419721


https://twitter.com/user/status/1465655925788889097

 

https://twitter.com/user/status/1465654979121795079

 

Copied from the NICE guidelines thread

Learn about M.E.
Episode 3 - Learn About ME and new NICE Guideline
December 08, 2021 Action for M.E.

Learn about M.E.
Episode 3 - Learn About ME and new NICE Guideline
Rewind Speed Forward
Info


Station: Buzzsprout / AfME
Date: December 8, 2021
WebRadio: https://www.buzzsprout.com/1717775/...-guideline-on-me-cfs-diagnosis-and-management
Ref: https://www.buzzsprout.com/1717775

Item: Nina Muirhead, Gregor Purdie, Helen Brownlie


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Show Notes
In this third episode of our Learn about ME podcast series, we hear from, Dr Nina Muirhead, creator of the Learn about ME CPD learning module and, Dr Gregor Purdie, about the importance of highlighting the changes in the newly updated NICE guideline on ME/CFS: diagnosis and management. They are joined by, Helen, who lives with ME and who volunteers for The 25% ME group. Helen shares her experience in order to encourage healthcare professionals to implement the changes in the guideline. We hope this episode can increase the likelihood of people with ME getting appropriate care and support.

 

"A collaboration of M.E. charities, led by Action for M.E., has been granted funding from the Scottish Government to support M.E. education for doctors in Scotland.
....
we are now working in partnership with M.E. Association, #MEAction Scotland, The 25% M.E. Group, Dr Nina Muirhead and the UK CFS/M.E. Research Collaborative’s Medical Education (CMRC Med Ed) Group, to disseminate and promote a free online learning module for professionals."

 

I forwarded details pf the cpd module when first released and it seems that some may have done it. There is a slightly more positive tone .

 

https://www.thescottishsun.co.uk/tv/8288579/celebrity-catchphrase-in-tears-mark-bonnar-win/

 

. . . such a shame The Scottish Sun journalist reporting this positive news story concluded her article with "treatments for chronic fatigue syndrome include talking therapies, exercise programmes and medicines."

 

agree, and anyway I don't see why they have to say what the 'treatments' are; I don't think it's commonly done for other illnesses.

and for that matter, if they did their homework they would find out that those are the current 'treatments' for almost all chronic diseases now in the UK.

 

'Medicines' are things i associate with childhood.... 'here we are little one, some medicine to make you feel better'

"a spoonful of sugar helps the medicine go down........" etc

Medication is the adult version.

Infantilising sufferers. as. per. usual.

 

Subtle, but bang on.

 

It's also somewhat ironic that the journalist managed to regurgitate the very kind of misinformed nonsense that AfME has vowed to be responsible for correcting - "Donate now to help us put an end to the ignorance . . . " (AfME website).

Mark Bonnar's thoughtful gift is much needed.

 

Action for M.E. and The ME Trust have announced they will be merging on 1 February to improve access to services for people with M.E., and their families and Carers.

https://www.politics.co.uk/opinion-former/press-release/2022/02/01/action-for-m-e-merger/

 

https://twitter.com/user/status/1503295069096402945

 

"Despite the devastating impact of M.E., understanding of the disease is still woeful. While at least 250,000 people live with M.E., and even more experiencing overlapping symptoms with M.E. following Covid, we have no treatments and little understanding of its causes. Significant investment in high-quality research is critical.

Action for M.E. has worked hard to improve the lives of children and adults with M.E., but this is not enough. To end the neglect of M.E. we need a national strategy that includes a focus on research.

Today we are launching Breakthrough-ME: our plan to rapidly grow research and funding."

https://www.actionforme.org.uk/news/breakthrough-me-our-plan-to-rapidly-grow-research/

 

Looks like they deleted it, I'll edit my post to remove it.