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Dom Profile picture
Dom
@domsalisbury
Ex-atmosphere/ocean scientist. Very ill with M.E #pwME. Patient advocate (when able). Interested in how we live. Open-minded, but always sceptical.
Jun 6 • 10 tweets • 2 min read
Thread 🧵

I've just learnt of a new project/study at Goldsmiths (University of London), which I have concerns about.

The project is called 'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube'. 1/n

gold.ac.uk/careers/work-p…
Image The above screenshot/link is the only information I can find online about the project, and it is not clear who is running this study.

However, I've seen a further document about the project, attached here: Image
Feb 21 • 5 tweets • 2 min read
The long-awaited NIH study has just been published.

Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

nature.com/articles/s4146… Some press:
statnews.com/2024/02/21/nih…
Jul 20, 2023 • 6 tweets • 1 min read
A quick thread on the 'imminent' UK Gov. ME/CFS Delivery Plan, and, in particular, research funding.

First, the situation RE UK publicly-funded ME/CFS research is truly dire. Right now there is just one active project attempting to understand the illness—DecodeME. 1/n Apart from DecodeME, the MRC has essentially not funded any direct research into ME/CFS for the past decade. Even NIHR funding—for the type of wishy-washy nonsense they love to fund—is currently low compared with past levels.