ME/CFS Alliance (UK)

Dolphin

Dolphin

Senior Member (Voting Rights)
Also seems to be referred to as the ME/CFS Alliance Think tank.
https://www.bridportnews.co.uk/sport/23553728.will-wright-play-100-holes-golf-charity-bridport/

not sure why he's raising money for this organisation? Do they need money?


The Alliance is a non-profit local solution-oriented think-tank chaired by Opal Webster-Philp working in partnership with university professors, researchers and medical professionals including complementary therapists and other stakeholders to build awareness, educate others, correct misunderstanding or misinformation and to share new and current up-to-date scientific evidence, and factual information that is currently emerging.



What are our aims?
    • To develop awareness and understanding of ME/CFS and associated conditions, e.g. Fibromyalgia, Gulf War Syndrome, Post Traumatic Stress Disorder and possibly now Long-Covid.
    • To encourage and support biomedical research, clinical excellence through dialogue and good communication across specialist medical scientific areas.
    • To work in partnership with clinicians, researchers and medical professionals and other stakeholders to develop a patient-centred approach and service.
    • To support a multi-disciplinary and inclusive approach by encouraging, facilitating, educating and training all the relevant medical and complementary professionals and the public where appropriate.
    • To pursue answers to hidden and undisclosed pieces of information.
    • To make sense of the inherited complexities and experiences of living with the condition ME/CFS.
    • To write a solution oriented book which joins up the confusing, fragmented aspects of the condition and thereby creating a more unified coherent narrative that can be better understood by all.
Click to expand...

Advisors:
Professor Sir Stephen Holgate
Professor Arthur F Willoughby
Dr James Robertson

https://mecfsalliance.org.uk/advisors/

their What is ME/CFS page could do with some alterations:

eg
The main symptom of CFS/ME is feeling extremely tired and generally unwell. In addition, people with CFS/ME may have other symptoms, including:
Click to expand...

https://mecfsalliance.org.uk/what-is-me-cfs/

 
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