Recent Activity
Activity stream for all registered members at Science for ME.
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Trish liked Ravn's post in the thread ME Assoc: How Many People in the UK have ME/CFS?.
Speaking of which, this preprint from Canada just came out. Discussed in its own thread but briefly, they looked at self-reported CFS...
May 20, 2024 at 8:54 AM -
Lou B Lou liked bobbler's post in the thread What's a term like 'green-washing' for the rehabilitation approach to ME/CFS and similar diseases?.
copied post I think we need to be confirming our 'ask' and clarifying the picture so they don't just get to make it look like 'noise'....
May 20, 2024 at 8:51 AM -
Fainbrog liked MrMagoo's post in the thread Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid.".
That’s what you do - reduce your overexertion. Stay under your pace points.
May 20, 2024 at 8:47 AM -
Fainbrog liked LJord's post in the thread Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid.".
I was thinking of it as a way to figure out that magical baseline and learn ways to stay under it.
May 20, 2024 at 8:47 AM -
Fainbrog liked MrMagoo's post in the thread Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid.".
Pacing has always been about resting. This is just a scientific way to see what your body counts as rest or exertion.
May 20, 2024 at 8:47 AM -
Fainbrog liked LJord's post in the thread Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid.".
I’ve seen a lot of guidelines and listened to various people talking about using monitoring to help with pacing and I have been and will...
May 20, 2024 at 8:47 AM -
Fainbrog liked MrMagoo's post in the thread Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid.".
It has the self-reported activity tags, daily symptoms by severity and the monthly FUNCAP. They’re at the point they can predict HRV...
May 20, 2024 at 8:46 AM -
Fainbrog liked MrMagoo's post in the thread Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid.".
I think it’s great they are looking at publishing imminently. One in the eye for BPS and a massive step forward for patients.
May 20, 2024 at 8:46 AM -
Fainbrog liked LJord's post in the thread Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid.".
https://www.youtube.com/live/zWOLxwwp75I?si=MtFr1MeQC7bSLoGY i’m not sure if I did this correctly. Interview with Harry Leeming. He...
May 20, 2024 at 8:46 AM
