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.
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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”
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This was posted today by a UK local ME group leader:
"Sounds a bit like the Lightning Process. One of our members became suicidal after the treatment. Others that did not respond were told they were doing it wrong. Very dangerous."
"Epidemiology of Myalgic Encephalomyelitis among individuals with self-reported Chronic Fatigue Syndrome in British Columbia, Canada, and their health-related quality of life"
"We are THRILLED to share the rolling successes of our 'Teach ME Treat ME' campaign with you, as we report back on the amazing medical education events that have taken place so far – with many more to come in the upcoming months!"
Article has lots more details along with reports of other Millions Missing events! 😁
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An open letter to Anna Gregorowski, chair of BACME (British Association of Clinicians in ME/CFS), from Members of the ME community, facilitated by the Chronic Collaboration.
It highlights failures of BACME to fully update their materials to comply with NICE guidelines, and failure of clinics run by members of BACME to move away from harmful past practices.
"Moreover, current cases of the NHS neglecting people living with very severe ME are being exacerbated due to the NHS trusts claiming they are following BACME guidance – not NICE guidelines."
The letter is available for added signatures and comments.
The august CDC in the US have redesigned their ME/CFS section [which contains sections for patients/general public & healthcare providers including a section from medical students].
"We have engaged a distribution company to ensure leaflets & posters are displayed in 3,000 GP surgeries in the UK. This will mean that we will know material is on display & that as leaflets are used, they can be replaced, & usage monitored"