Recent Activity
Activity stream for all registered members at Science for ME.
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wingate liked Jaybee00's post in the thread Lou Gehrig Day—ALS (USA) June 2.
MLB commemorates 4th annual Lou Gehrig Day https://www.mlb.com/news/mlb-commemorates-4th-annual-lou-gehrig-day...
Jun 3, 2024 at 2:46 AM -
bobbler liked Adrian's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
How about a summary of how someones symptoms change with activities written in a short paragraph and derived from data recorded at the...
Jun 3, 2024 at 2:45 AM -
bobbler liked Jonathan Edwards's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
Detailed recording ought to be useful for research but the issue here is how people should be assessed in routine practice. Until we...
Jun 3, 2024 at 2:44 AM -
bobbler liked Adrian's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
I've not been following this debate but it occurs to me that developing a new PROM could be the wrong approach. A PROM is basically a...
Jun 3, 2024 at 2:44 AM -
bobbler replied to the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
they've separated cause and effect (immediate and delayed). And the exact thing that is not required in ME/CFS is for someone to...
Jun 3, 2024 at 2:43 AM -
bobbler replied to the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
If they aren't collecting clinical data, or heart rate in reaction to any of these 'days' are they really looking and interested in...
Jun 3, 2024 at 2:37 AM -
SNT Gatchaman liked Jaybee00's post in the thread Lou Gehrig Day—ALS (USA) June 2.
MLB commemorates 4th annual Lou Gehrig Day https://www.mlb.com/news/mlb-commemorates-4th-annual-lou-gehrig-day...
Jun 3, 2024 at 2:35 AM -
NelliePledge liked Hutan's post in the thread UK: New advocacy resource for people with ME in hospital.
Certainly MS is different. But I think it's still legitimate for the ME Association, for example, to expect to have credibility when...
Jun 3, 2024 at 2:33 AM -
Peter Trewhitt 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 2:32 AM -
Peter Trewhitt 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 2:32 AM -
Peter Trewhitt 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 2:31 AM -
Peter Trewhitt liked MrMagoo'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?.
A lot of definitions of malaise are “a feeling of unease” which can be read more than one way. Certainly if you feel ill, you are not at...
Jun 3, 2024 at 2:31 AM -
Peter Trewhitt liked DigitalDrifter'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?.
They mean different things to different people but I think diluting the criteria to allow for fatigue after exercise can be highly...
Jun 3, 2024 at 2:31 AM -
Peter Trewhitt liked poetinsf'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?.
If you are asking if I get brain fog, yes, I still get it as a part of PEM. But the cognitive PEM has never been nearly as big a problem...
Jun 3, 2024 at 2:31 AM
