Recent Activity
Activity stream for all registered members at Science for ME.
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Peter Trewhitt 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 9:49 AM -
Peter Trewhitt 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 9:49 AM -
Peter Trewhitt 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 9:49 AM -
Peter Trewhitt liked forestglip's post in the thread 2024: NIH National Institutes of Health - ME/CFS Symposium on Intramural study - 2 May.
Health Rising blog about the symposium:...
Jun 3, 2024 at 9:48 AM -
Peter Trewhitt liked bobbler's post in the thread UK: Women forced to attend up to 10 GP appointments to get menopause diagnosis, study finds.
Some of it might be good GPs etc checking it isn't something else, but given sending people away to see if they come back has been...
Jun 3, 2024 at 9:48 AM -
Peter Trewhitt 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 9:48 AM -
Peter Trewhitt 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 9:47 AM -
Peter Trewhitt 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 9:46 AM -
Peter Trewhitt 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 9:46 AM -
Peter Trewhitt liked Amw66's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
It would be interesting to know when this actually started . It smacks of a process and methodology that's sat on a shelf awaiting...
Jun 3, 2024 at 9:46 AM -
Peter Trewhitt liked Lou B Lou's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
But it's not and never will be collaborative. Sarah Tyson and Russell Fleming don't do collaboration. They presume to speak for us,...
Jun 3, 2024 at 9:45 AM -
Trish liked SNT Gatchaman's post in the thread Open Medicine Foundation (OMF).
Is the effect purely related to volume expansion (correcting pre-load failure / reduced pre-load reserve) or is there a secondary more...
Jun 3, 2024 at 9:45 AM -
Peter Trewhitt 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 9:45 AM
