Recent Activity
Activity stream for all registered members at Science for ME.
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ringding liked Andy's post in the thread Open GEM study - Prevalence of genetic diseases in ME/CFS patients, 2022, Esther Crawley, Bristol University.
Absolutely, please do.
Jun 14, 2024 at 9:10 PM -
rvallee liked Yann04's post in the thread 'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube [Goldsmiths].
Some thoughts on the “stated goals” of the study as said in the information sheet (each bullet point in italic is a stated goal — and...
Jun 14, 2024 at 9:09 PM -
rvallee liked Jonathan Edwards's post in the thread 'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube [Goldsmiths].
What they are open about is that the study is seen by them as a political imperative. In other words not looking and learning but...
Jun 14, 2024 at 9:08 PM -
rvallee replied to the thread 'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube [Goldsmiths].
[IMG]
Jun 14, 2024 at 9:07 PM -
rvallee liked Peter Trewhitt's post in the thread 'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube [Goldsmiths].
I have been pondering my comparison of this study to the lottery. Undoubtedly it would be methodologically identical to look at how to...
Jun 14, 2024 at 9:07 PM -
MelbME replied to the thread Open Medicine Foundation (OMF).
Have you used visible app to predict your day? Does it do a better job than you at predicting your day?
Jun 14, 2024 at 9:05 PM -
MelbME liked Kitty's post in the thread Open Medicine Foundation (OMF).
Not able to speak for others, but I can't. I may wake up feeling much worse than usual, yet two hours later feel as well as I ever do....
Jun 14, 2024 at 9:04 PM -
MelbME replied to the thread Open Medicine Foundation (OMF).
Yeah I'm aware of visible. I think they try estimate capacity in the morning right? Sleep data i think. I'd be looking broad symptom...
Jun 14, 2024 at 9:04 PM -
MelbME liked Trish's post in the thread Open Medicine Foundation (OMF).
Are you aware of or in touch with people researching the Visible app that uses HR and HRV monitoring as well as symptoms and FUNCAP? I'm...
Jun 14, 2024 at 9:01 PM -
Wyva liked ME/CFS Skeptic's post in the thread Lancet - Medically unexplained symptoms explained.
It's also a strange thing to study: whether making up an explanation for symptoms makes the patient feel less ill. I assume that the...
Jun 14, 2024 at 9:01 PM -
RaviHVJ liked Robert 1973's post in the thread BBC journalist has reached out asking for more info on ME patient abuse claims.
Strongly agree. Remember too that Margaret Williams is a pseudonym. So unless it’s supported by reliable primary sources it is an...
Jun 14, 2024 at 9:01 PM -
Wyva liked MrMagoo's post in the thread : TV casting call for people living with ME/CFS.
Ok please remember not to threaten their lives, you know how pwME are terrifying and abusive/s
Jun 14, 2024 at 8:59 PM
