Recent Activity
Activity stream for all registered members at Science for ME.
-
MrMagoo liked bobbler's post in the thread [Thought experiment] In a random cohort of 100 ME/CFS patients (recent diagnosis via CCC), what can you know about them with 90%+ certainty?.
and importantly these days is how it is interpreted as 'to be treated' by even nice GPs has been influenced by certain pushes based on...
Jun 3, 2024 at 12:23 PM -
MrMagoo liked bobbler's post in the thread [Thought experiment] In a random cohort of 100 ME/CFS patients (recent diagnosis via CCC), what can you know about them with 90%+ certainty?.
Agree, that it is interesting to hear the history and how it might like many other things have been something serious back then, but if...
Jun 3, 2024 at 12:23 PM -
Kitty liked Simon M's post in the thread Preprint Development of Epidemiological Research Guidelines for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome in Canada, 2024, Nacul.
When DecodeME looked at this, that was the reason we made the choice - plus reducing the burden for patients. That recommendation seems...
Jun 3, 2024 at 12:23 PM -
MrMagoo liked bobbler's post in the thread [Thought experiment] In a random cohort of 100 ME/CFS patients (recent diagnosis via CCC), what can you know about them with 90%+ certainty?.
Over there/in other countries did the medical profession (I don't know if they still do) write patient notes and medications etc in...
Jun 3, 2024 at 12:22 PM -
Kitty liked Amw66's post in the thread Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al.
Emotional and motivational problems .... If only
Jun 3, 2024 at 12:22 PM -
Kitty liked Eleanor's post in the thread Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al.
I feel sad for the kids who underwent that testing presumably in the hope that they were contributing to some meaningful research.
Jun 3, 2024 at 12:22 PM -
MrMagoo liked bobbler's post in the thread [Thought experiment] In a random cohort of 100 ME/CFS patients (recent diagnosis via CCC), what can you know about them with 90%+ certainty?.
That's interesting, but nope nothing like my PEM, which has been far more like you suddenly get eg glandular fever. In the earlier years...
Jun 3, 2024 at 12:22 PM -
Kitty liked rvallee's post in the thread Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al.
I don't think the 'study' deserves its own thread, it's just a huge muddle of academic echo chamber brain rot that tries to pin brain...
Jun 3, 2024 at 12:22 PM -
MrMagoo liked Kitty's post in the thread [Thought experiment] In a random cohort of 100 ME/CFS patients (recent diagnosis via CCC), what can you know about them with 90%+ certainty?.
When it was used to describe my illness, I think it really was in that sense. I first heard it in the mid-70s, when I'd seen the GP...
Jun 3, 2024 at 12:21 PM -
MrMagoo liked NelliePledge's post in the thread [Thought experiment] In a random cohort of 100 ME/CFS patients (recent diagnosis via CCC), what can you know about them with 90%+ certainty?.
I don’t see why malaise couldn’t be understood in the same way in English, probably because I knew the French I’ve never felt it to be...
Jun 3, 2024 at 12:21 PM -
MrMagoo liked rvallee's post in the thread [Thought experiment] In a random cohort of 100 ME/CFS patients (recent diagnosis via CCC), what can you know about them with 90%+ certainty?.
It sure would be great if there was a better term, because it's a really important concept. I don't think it's common in English, but...
Jun 3, 2024 at 12:21 PM -
Kitty liked Lou B Lou's post in the thread Online workshop: Clinical Trial Design in People with ME/CFS, 4th June 2024.
"In rare cases where you disagree, feel free to comment, but please don’t be abusive. Any abusive language will not be tolerated, and...
Jun 3, 2024 at 12:20 PM -
Kitty liked NelliePledge's post in the thread Online workshop: Clinical Trial Design in People with ME/CFS, 4th June 2024.
Woah that is ridiculous. Are they deliberately trying to upset people so that they get cross on the call. These people are so...
Jun 3, 2024 at 12:20 PM -
Kitty liked Trish's post in the thread Online workshop: Clinical Trial Design in People with ME/CFS, 4th June 2024.
Is this normal in webinars like this, or is it specially inserted because of mythology about abusive pwME? It seems to me to be pretty...
Jun 3, 2024 at 12:20 PM -
Kitty liked MEMarge's post in the thread Online workshop: Clinical Trial Design in People with ME/CFS, 4th June 2024.
Posts moved from UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023...
Jun 3, 2024 at 12:20 PM
