Recent Activity
Activity stream for all registered members at Science for ME.
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NelliePledge liked Sean's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
Doctors have to say we don't know, we got nothing. Equally patients have to hear and accept it. And not just patients, but also their...
Jun 13, 2024 at 11:05 AM -
Robert 1973 liked Caroline Struthers's post in the thread Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review.
Here's the latest correspondence with Cochrane. CEO Catherine Spencer wrote to me yesterday and I replied copying in COPE and...
Jun 13, 2024 at 11:05 AM -
FMMM1 liked Binkie4's post in the thread Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al.
No wonder it took Walitt and Nath took so long to write the paper. They had to find a way to present the data so it showed what they...
Jun 13, 2024 at 11:04 AM -
SNT Gatchaman liked Binkie4's post in the thread Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al.
No wonder it took Walitt and Nath took so long to write the paper. They had to find a way to present the data so it showed what they...
Jun 13, 2024 at 11:04 AM -
NelliePledge liked Andy's post in the thread What guidance exists to support patient partner compensation practices? A scoping review of available policies and guidelines 2024 Fox et al.
Abstract Background An integral aspect of patient engagement in research, also known as patient and public involvement, is...
Jun 13, 2024 at 11:04 AM -
SNT Gatchaman liked Jonathan Edwards's post in the thread Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al.
I may be have been naïve, but to begin with I gave everyone the benefit of the doubt. But every time I go through these three stages...
Jun 13, 2024 at 11:03 AM -
Yann04 liked Sean's post in the thread 'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube [Goldsmiths].
I was at uni during the time when post-modernism was the Latest Big Thing. It was a disturbing lesson in how gullible and faddish the...
Jun 13, 2024 at 11:03 AM -
Yann04 liked RaviHVJ's post in the thread 'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube [Goldsmiths].
I"d also be fascinated to know more about "the amazing advisory group of medical doctors and researchers who worked their butts off to...
Jun 13, 2024 at 11:03 AM
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Yann04 liked RaviHVJ's post in the thread 'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube [Goldsmiths].
I sent a very polite email earlier this week to Dr Cefai laying out my concerns with the study - that she was studying a self-selecting...
Jun 13, 2024 at 11:03 AM -
Yann04 liked Nightsong's post in the thread 'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube [Goldsmiths].
Some quotes from from a post to Agle's mailing list with details of the PI:
Jun 13, 2024 at 11:03 AM -
Yann04 liked SNT Gatchaman's post in the thread Esther Crawley.
Yes, only one of them is a professor of evidence-based medicine.
Jun 13, 2024 at 11:00 AM -
Yann04 liked Trish's post in the thread Esther Crawley.
Indeed, not just poles apart, planets apart. I'm not sure what planet Garner is on.
Jun 13, 2024 at 11:00 AM -
Yann04 liked John Mac's post in the thread Esther Crawley.
A very, very wide spectrum
Jun 13, 2024 at 11:00 AM
