Approximately 400 people protested on Saturday 11 may at Federal Square in Bern in Switzerland for better care for ME/CFS patients. Chantal Britt, president of the Long Covid Switzerland association helped to organize the protest. She pleaded to establish centers of expertise and promote research on ME/CFS.
A ME/CFS Awareness Day event was organized in Hungary. Several ME/CFS videos were shown and discussed. The event was video-recorded and can be watched on Facebook.
A 'Liegenddemo', a demonstration where people lay flat on the ground, was organized on 11 May in Berlin to raise awareness of ME/CFS. Prof. Scheibenbogen and the German Minister of Health gave a short speech.
@tomkindlon@mecfs yup. Especially ME and fibromyalgia, but all chronic conditions have suffered the same attitudes and responses until shockingly recent.
Also probably why the concept of long covid isn’t really being taken seriously, nor is likely to be for quite some time
An interview by David Tuller DrPH with patient advocate Anil van der Zee about his video (embedded at link) titled "The Prison of M.E." on living with severe ME made for the ME Awareness Day.
Recording when ME/CFS Research Roadmap was discussed during the National Advisory Neurological Disorders and Stroke (NANDS) Council meeting on Wed, May 15.
We have produced a short film about #MECFS patients‘ prejudices. The film shows artistically how the disease isolates patients by breaking even their closest bonds through a lack of understanding from friends, partners, and relatives.
Director: Béla Baptiste
Camera: Edward Bally
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Has ME/CFS's Time Finally Come at the NIH? The Vicky Whittemore Interview
A 1-hour conversation between Cort Johnson & Vicky Whittemore from NIH who is "involved in virtually everything of consequence happening with #MECFS at the NIH"
Cort Johnson has also done a write-up of the interview in which he summarises:
“While ME/CFS’s time at the NIH has clearly not finally come, the news for ME/CFS in general is encouraging. Interest in it and post-viral diseases is up significantly. Vicky feels the field has grown enormously since 2015, and I agree. By bringing together consortiums and think tanks together, Vicky Whittemore is doing what she can with what she has.” @mecfs#MEcfs#CFS#PwME
Article about a demonstration for specialist ME services in Northern Ireland. Interviews with Joan McParland, founder of Hope 4 ME and Fibo NI, Rosie Pigeon and Rebecca Logan
“Podcast interview with Eliza Charley. Highly informed and very well articulated discussion of the experiences of medical, societal and self-gaslighting in the context of medically-induced stigma”