Recent Activity
Activity stream for all registered members at Science for ME.
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RedFox liked Trish'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?.
Fatigue is what I felt when well after a long hike, dancing all night or being up several times a night feeding a baby or caring for a...
Jun 3, 2024 at 2:17 PM -
RedFox liked butter.'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 all had an insufficient workup during the acute and sub-acute stage of their disease/trigger event, making it close to impossible...
Jun 3, 2024 at 2:17 PM -
MeSci 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 2:13 PM -
MeSci 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.
In a sense maybe, but what we normally call research is investigation that reliably transfers to a general situation. And when it comes...
Jun 3, 2024 at 2:10 PM -
MeSci liked Kitty's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
To me, there might also be an opportunity to work on something sooner rather than later, iron out as many of the creases as we can, and...
Jun 3, 2024 at 2:09 PM -
MeSci liked Trish's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
Every pwME's efforts at pacing is a research exercise carried out by the pwME as we navigate every day's activity and rest. All I'm...
Jun 3, 2024 at 2:07 PM -
MeSci liked Trish's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
I think I would have found it very helpful when I was newly learning to cope with symptoms and crashes and still working part time. It...
Jun 3, 2024 at 2:06 PM -
MeSci 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 really gets to me. Paternalism at its worst. Michael J. Fox says “Parkinson's patients are the experts on what we have. We have a...
Jun 3, 2024 at 2:05 PM -
MeSci liked Trish's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
Crossposted with Adrian. I think Adrian's idea is worth exploring. It wouldn't necessarily produce a long readout, rather, if I...
Jun 3, 2024 at 2:03 PM -
Yann04 liked Andy's post in the thread European ME Coalition ME/CFS Pledge for the 2024 European elections.
From Twitter, "The list of supporters keeps on growing. 32 candidates and/or MEPs have signed the ME/CFS pledge thus far."
Jun 3, 2024 at 2:03 PM -
Yann04 liked Andy's post in the thread European ME Coalition ME/CFS Pledge for the 2024 European elections.
"The ME/CFS pledge for the European elections We, at the European ME Coalition (EMEC) call upon candidates in the European elections to...
Jun 3, 2024 at 2:03 PM -
MeSci 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 2:01 PM -
MeSci 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 3, 2024 at 2:00 PM -
MeSci 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 2:00 PM -
MeSci 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 3, 2024 at 1:59 PM
