🧵
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”
2/
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"
🧵
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"
In this study, having previously received an functional somatic syndrome diagnosis such as CFS was associated with female sex and poor health-related quality of life. No association was found for health anxiety, kinesiophobia and physical activity.
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
Dr Audrey Ryback (who is funded by Action for ME) and Charlie Hillier plan to replicate with a larger sample work by Fluge and Mella who found something in serum that changed the behaviour of healthy lab-grown muscle cells.
They will use the Seahorse anlayser to look at glycolysis and mitochondrial respiration. Using a stain and microsocopy, they will look for the mitochondrial fragmentation that Prusty saw, and will also investigate how serum might affect cell function.