Recent Activity
Activity stream for all registered members at Science for ME.
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Sean 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 1:59 AM -
Sean 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 1:58 AM
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Sean liked alex3619's post in the thread : TV casting call for people living with ME/CFS.
That was me in 1993. I started walking and then running again, in a national park behind where I live. It went OK for a while. Then it...
Jun 13, 2024 at 1:57 AM -
Sean replied to the thread : TV casting call for people living with ME/CFS.
I believe the correct term is 'bang stick'.
Jun 13, 2024 at 1:57 AM -
alex3619 replied to the thread : TV casting call for people living with ME/CFS.
That was me in 1993. I started walking and then running again, in a national park behind where I live. It went OK for a while. Then it...
Jun 13, 2024 at 1:57 AM -
Sean liked alex3619's post in the thread : TV casting call for people living with ME/CFS.
At one point there was a stat often quoted that half of all CFS (don't think it was ME) patients who recovered relapse at some point,...
Jun 13, 2024 at 1:56 AM -
Sean liked bobbler's post in the thread : TV casting call for people living with ME/CFS.
I find in this situation using the term with these people of ‘you are out of date and working based on old and harmful guidelines and...
Jun 13, 2024 at 1:56 AM -
Sean liked Tia's post in the thread : TV casting call for people living with ME/CFS.
It's a bit like saying we're looking for a person with celiac disease to come on our programme about eating bread. There'll always be...
Jun 13, 2024 at 1:55 AM -
Sean liked Kitty's post in the thread : TV casting call for people living with ME/CFS.
Dunno, but I reckon the cross-country sitting down would be the best sport to train for.
Jun 13, 2024 at 1:55 AM -
forestglip liked Colleen Steckel's post in the thread Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al.
While this is a very complex article covering the data, this quote sums it up nicely: "It is easy to see why the authors chose not to...
Jun 13, 2024 at 1:53 AM -
forestglip attached a file to the thread Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al.
The comparison is astounding. NIH chart: [ATTACH] Chart created from raw data (from blog): [ATTACH] And even if counting the little...
Jun 13, 2024 at 1:52 AM
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alex3619 replied to the thread : TV casting call for people living with ME/CFS.
At one point there was a stat often quoted that half of all CFS (don't think it was ME) patients who recovered relapse at some point,...
Jun 13, 2024 at 1:51 AM -
Sean liked forestglip's post in the thread Open Medicine Foundation (OMF).
"Personalised Treatment Trials: Monitoring and Improving the Connection of Treatments to Patients" [MEDIA] Description from YouTube:...
Jun 13, 2024 at 1:50 AM -
alex3619 replied to the thread : TV casting call for people living with ME/CFS.
Or ice skating for the over 100s in Costa Rica.
Jun 13, 2024 at 1:48 AM -
Sean liked Jaybee00's post in the thread Nature: ‘It’s all gone’: CAR-T therapy forces autoimmune diseases into remission.
https://www.medpagetoday.com/meetingcoverage/eular/110610 CAR-T Treatment Continues to Astonish in Rheumatologic Diseases
Jun 13, 2024 at 1:48 AM
