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".
"Anil was a dancer before he got sick. Now he makes art through his images and words. I am constantly amazed at how active and engaged he manages to be with his phone as his instrument. Here is The Prison of M.E., a haunting video he posted for World ME Awareness Day on Sunday, May 12th (two days ago), about life as a severe patient."
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.”
Behind closed doors in the dark, Margot, @StillViv, @DaschaEliza, Ilse, @AnilvanderZee , Lara talk about life with severe ME. @LouCorsius talks about Céline.
@mecfs
Welcome to the PwMElympics
People with myalgic encephalomyelitis (PwME) perform daily exploits.
Decathlon: working outside home
Climbing: going upstairs
Marathon: walking
Relay Race: taking part to a conversation
Gymnastics: turning in bed
Obstacle course: getting a disability pension https://www.youtube.com/watch?v=zTXaxN1QObA