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The Norwegian Broadcaster NRK has an article about the survey from the European ME Alliance (EMEA) which included 11 000 people from 44 countries. 74% answered they have little to no health care.
Unsure how common this is in other #ChronicIllness affecting cognition, but when you have #MyalgicEncephalomyelitis the writing errors you’re almost guaranteed to make are:
Double the same word
or
Exclude it altogether
Or do both!
So frustrating & the sicker you are the worse it gets. You simply can’t see mistakes! Other problems too ofc but I’ve found this is the most common error made by #PwME
(UK)
"Government funders of research in ME/CFS, academic researchers and persons or representatives of persons/groups with lived experience of ME/CFS came together to develop a Researcher Toolkit"
"Over the past several months, clinicians and medical students across the U.S. have attended presentations, roundtables and conferences to learn about ME/CFS – and how to take the Mayo Clinic Proceedings Continuing Medical Education course on ME/CFS."
Researchers from the Quadram Institute and University of East Anglia are testing the feasibility of red light therapy for people with ME. This pilot study, called Light ME Up, is being supported by the charity Invest in ME Research @invest_in_me_research
"#MEAction’s narrative activity study with Mayo Clinic opens today! We’re looking for people with ME/CFS or Long COVID with PEM to share their experiences.
The survey will be open from 5/24/2024 to 6/23/2024."
Long survey (estimate says 20-90 minutes?) but you can do it in sections and come back.
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.
"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.
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].
Trial By Error Reporting on ME, ME/CFS, #longCovid, & "Medically Unexplained Symptoms"
A crowdfunding for David Tuller DrPH's important work on "debunking awful research". This will secure his academic position at Berkeley until December 31, 2024