Recent Activity
Activity stream for all registered members at Science for ME.
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alktipping 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 2, 2024 at 11:26 PM -
Eddie liked MelbME's post in the thread Open Medicine Foundation (OMF).
If it is effective then it could be doing many things. We will have a better understanding after the study based on the design. If we...
Jun 2, 2024 at 11:24 PM -
Eddie liked MelbME's post in the thread Open Medicine Foundation (OMF).
Not convincing data in ME yet we hope to provide the answers to this question by testing sham, saline, hypotonic saline and hypertonic...
Jun 2, 2024 at 11:23 PM -
alktipping 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 2, 2024 at 11:22 PM -
alktipping 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.
My point though is more that the use of trackers. AI really enables very different interfaces and ways to interact so its not just say...
Jun 2, 2024 at 11:22 PM -
NelliePledge 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?.
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 2, 2024 at 11:22 PM -
alktipping 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 11:21 PM -
alktipping 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 11:21 PM -
alktipping 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 11:21 PM -
NelliePledge replied to the thread Women forced to attend up to 10 GP appointments to get menopause diagnosis, study finds.
Maybe they will finally start getting better checklists
Jun 2, 2024 at 11:20 PM -
alktipping liked MrMagoo's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
Oh they reiterated that they had a duty to deliver the information “to everyone” and this was the best way to do it. In fact they...
Jun 2, 2024 at 11:19 PM -
alktipping 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.
Informative that one - the mode of learning chosen indicates to me that it is either someone's beliefs (they won't do it, worse...
Jun 2, 2024 at 11:19 PM -
alktipping 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 2, 2024 at 11:18 PM -
Hutan liked Jonathan Edwards's post in the thread Animal research for ME.
Now that I remember, @PeterW, we used to call it the Yak Dung Effect in the lab in 1980. Give a mouse or a rat anything and the graph...
Jun 2, 2024 at 11:15 PM
