"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"
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.
New research from UK team:
Examining well-being and cognitive function in people with #longCovid and ME/CFS, and age-matched healthy controls: A Case-Case-Control Study
YouTuber and behavioural scientist Pete Judo presents the infamous #PACEtrial which he describes as "what is possibly the worst medical trial in modern history. (contd)”
“(Contd) Worst in its bizarre practices, worst in terms of its potentially fraudulent reporting of results, and worst of all its potential harm it has caused to a very vulnerable group of people".
Added quotes:
“due to the lack and/or incorrect medical care, stigmatization, social isolation and lack of social security - trauma or a depressive reaction can develop in ME/CFS-affected people […] All [treament] measures must be adapted to the PEM and the associated risks.”
“Severely affected persons must be shielded from all stimuli and are completely in need of care - up to artificial nutrition. The disease burden is so high that the average quality of life is lower [than] MS, cystic fibrosis, diabetes mellitus, epilepsy, AIDS or cancer”
“Psychotherapy has only supporting significance for ME/CFS and is carried out without curative objectives. Gradually activating elements are harmful and can worsen the condition in the long term and irreversibly [2, 23, 26, 33, 36,37, 101, 141].”
“However, pacing in ME/CFS patients with a very high degree of severity can hardly be implemented or not at all, as even basic and vital activities such as eating or minimal movements can lead to a deterioration of the condition.”
“ME/CFS research is dramatically underfunded internationally in view of the high number of people affected and the significant burden of disease [173, 174]. Previous research initiatives have been made possible mainly by private funds and foundations.”