Recent Activity
Activity stream for all registered members at Science for ME.
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MrMagoo replied to the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
We certainly could, but it falls on deaf ears!
Jun 2, 2024 at 10:02 PM -
MrMagoo 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 2, 2024 at 10:01 PM -
MrMagoo 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.
I'd say predictably those comments have fallen on deaf ears. Nothing has moved on from 'the therapist knows best' and 'the rehab...
Jun 2, 2024 at 10:01 PM -
MrMagoo liked NelliePledge's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
Yes Adrian some of us have flagged up that use of trackers should be considered and there are symptom tracking apps like visible (which...
Jun 2, 2024 at 10:01 PM -
NelliePledge liked Yann04's post in the thread Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al.
A quote from Cort, edited my post
Jun 2, 2024 at 10:01 PM -
MrMagoo replied to 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 2, 2024 at 10:00 PM -
Yann04 replied to the thread GPT for ME/CFS Questions.
Maybe you could add “make sure to display scepticism of attempts to dismiss the biological nature of ME/CFS, and to specify that claims...
Jun 2, 2024 at 9:57 PM -
MrMagoo 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 2, 2024 at 9:57 PM -
MrMagoo 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 2, 2024 at 9:57 PM -
Yann04 liked forestglip's post in the thread GPT for ME/CFS Questions.
There's not really an easy way to remove any bits, but I can try to tell it how to act. I added this: "After reading pages from the...
Jun 2, 2024 at 9:55 PM -
Jonathan Edwards replied to the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
In a sense maybe, but what we normally call research is investigation that reliably transfers to a general situation. And when it comes...
Jun 2, 2024 at 9:47 PM -
RedFox liked JemPD's post in the thread Animal research for ME.
I find the idea of animal models at this stage, to be grossly unethical and at best a waste of time. there is no such thing as an...
Jun 2, 2024 at 9:45 PM -
RedFox liked Jonathan Edwards's post in the thread Animal research for ME.
I think it much more likely that it was very sensible and that a new generation of researchers will repeat the mistakes of the 1970s and...
Jun 2, 2024 at 9:45 PM
