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)”
"86% of DecodeME participants consented to sharing their de-identified data with other researchers and 95% of participants consented to being recontacted for new research projects"
" #DecodeME is offering data access to other approved researchers until the end of the study in August 2025 in the hope that it will help accelerate research towards possible diagnostic tests and treatments for ME/CFS."
I wouldn’t have the energy for the whole event so plan to come in just before the chat over free tea/coffee/water & biscuits. Do say hello if you see me. 👋
'Beth Pardo is among the people who developed ME/CFS after contracting COVID.' 'Pardo went from running ultramarathons to being unable to leave her bed'
A reminder that if you live within 50 miles of NYC and you have a PRE-2020 #MECFS diagnosis, then @VirusesImmunity and I NEED your help! If you have difficulty traveling we will come to you. Please help us to hit our recruitment goals if you can!
Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath
Turns out you can vote multiple times! It's not clear to me when the reset happens, but go spam that vote button!! (Please)
Context:
I've submitted a video, championing the Open Medicine Foundation. If you can vote for ours we could stand to direct a big chunk of money towards CFS research.
2-minute video of Dave reading his poem plus a separate text piece by him
Dave who became ill with #CFS at 21 17 years ago, describes what it’s like to live with the condition, the impact on his life & sense of self worth, & how he has built a meaningful life, despite the condition.
“Living with chronic fatigue syndrome (CFS) is like being erased. It rubs out what my brain and body can do, turning me into a reduced version of myself.”
“Having CFS is like being a dormant seed, waiting for just enough energy to come alive.”
2/
“Immunophenotype results suggested the triggering of a stress response in ME/CFS B cells associated with increased usage of additional substrates to maintain necessary ATP levels.”
(UK)
Living with M.E. A Photographic Study by Jeremy Jeffs
Would you be willing to participate and share your ME journey?
Photographer Jeremy Jeffs is looking for more people to take part in a project that aims to give identity and visibility to people who are living with M.E.
2/
For the past 2 years Jeremy, who has M.E. himself, has been travelling around the country photographing people in their homes, with the aim of showing the many ways in which the disease affects people.
‘This isn’t a life’: The crushing burden of Long Covid
The description of symptoms perfectly describe how I was stricken by ME/CFS back in the early 1990s. There were those friends and family who thought I was a malingerer. There was no support, so we formed a group and supported ourselves. I still have the odd day with issues. I mostly suffer from pains, but I just get on with my life and am able to live an enjoyable one.
A new crowdfunding to secure David Tuller DrPH's academic position till June 2024. The aim is to raise $65,000 by November 30. There is still a lot of important work to do & to report on, for instance with the entrance of #PostCovid. "It was immediately apparent the same cabal of researchers I'd spent years criticising were seeking to colonise the field of #LongCovid with the same egregiously flawed arguments & research strategies"