Recent Activity
Activity stream for all registered members at Science for ME.
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Turtle liked Ravn's post in the thread 2024: Twitter campaign aimed at John Oliver and Jon Stewart.
Don't know if this has been posted already as I can't see the content of linked xtweets. But this thread is worth (re)posting, it's...
Jun 3, 2024 at 9:33 AM -
Trish 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.
If I were working in this area the first thing I would do is set out what the PROM is trying to achieve and hence define the properties...
Jun 3, 2024 at 9:31 AM -
Trish 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.
The ME association are trying to make sure that clinics follow the new NICE guidelines and don't still do GET. My point is that there...
Jun 3, 2024 at 9:30 AM -
Trish 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.
PROMs are used more widely than ME. I think Sarah Tyson has worked on them in other areas. From my perspective they are not measurement...
Jun 3, 2024 at 9:30 AM -
Trish 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.
From monitoring I would see three things: 1) Are symptoms changing and hence should a patient be reassessed incase something else is...
Jun 3, 2024 at 9:30 AM -
Trish liked JellyBabyKid's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
This is a really good point. None of this should be in any way antagonistic, it should be completely collaborative.
Jun 3, 2024 at 9:29 AM -
Trish liked bobbler's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
The issue no one talks of is coercion and all of the forms that come under this (social pressure , culture, all these links to schools,...
Jun 3, 2024 at 9:26 AM -
Trish liked Ravn's post in the thread News from Aotearoa/New Zealand and the Pacific Islands.
After that serious piece of work Tapanui 'Flu is having some fun with this Twitter campaign aimed at John Oliver and Jon Stewart
Jun 3, 2024 at 9:24 AM -
Trish 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 9:23 AM -
Trish liked Ravn's post in the thread Tapanui Flu.
Tapanui 'Flu is having some fun with this Twitter campaign aimed at John Oliver and Jon Stewart
Jun 3, 2024 at 9:23 AM -
Trish liked SNT Gatchaman's post in the thread 2024: Twitter campaign aimed at John Oliver and Jon Stewart.
Oh well done @Tapanui 'Flu !!! :thumbup::thumbup::thumbup::emoji_bird:
Jun 3, 2024 at 9:22 AM -
Trish liked Ravn's post in the thread 2024: Twitter campaign aimed at John Oliver and Jon Stewart.
Don't know if this has been posted already as I can't see the content of linked xtweets. But this thread is worth (re)posting, it's...
Jun 3, 2024 at 9:22 AM -
Amw66 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.
PROMs are used more widely than ME. I think Sarah Tyson has worked on them in other areas. From my perspective they are not measurement...
Jun 3, 2024 at 9:19 AM -
Trish 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 9:19 AM
