Recent Activity
Activity stream for all registered members at Science for ME.
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Trish liked Dolphin's post in the thread USA Centers for Disease Control (CDC) news (including ME/CFS Stakeholder Engagement and Communication Calls).
This meeting took place in 2021 so probably not of interest to many people but I don't recall seeing this information before (but I...
May 20, 2024 at 10:42 AM -
Sean liked alex3619's post in the thread What are the necessary conditions and criteria for a theoretical model of ME/CFS?.
With my current thinking ME is a dynamic process. Its not damage. Its dysregulation, but that could include epigenetic changes. That...
May 20, 2024 at 10:41 AM -
Sean liked rvallee's post in the thread UniteToFight2024 Long Covid and ME/CFS conference, 15th and 16th May 2024.
A 2-page summary, gives a good overview of what was discussed: And some selected quotes:
May 20, 2024 at 10:41 AM -
Sean 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 10:40 AM -
Sean liked rvallee's post in the thread General news about Fabricated and Induced Illness syndrome (FFI).
Continuing the total cover-up of Long Covid, zero mention of what is known to be the main cause of school absence. The fact that it's...
May 20, 2024 at 10:39 AM -
Sean replied to the thread General news about Fabricated and Induced Illness syndrome (FFI).
A spokesperson for the Department for Education said: “We know some children face greater barriers to attendance, like pupils with...
May 20, 2024 at 10:39 AM -
Sean 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.
They’ve done PROMS for mental ill health in NHS...
May 20, 2024 at 10:33 AM -
oldtimer liked Tapanui 'Flu's post in the thread News from Aotearoa/New Zealand and the Pacific Islands.
Kia ora everyone. I've been quiet on S4ME due to lack of cognitive spoons, so this is my first post here (and I hope I’m doing it...
May 20, 2024 at 10:33 AM -
Sean liked Peter Trewhitt's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
It wouldn’t be me if I didn’t go off on a tangent. My niece is getting married in four weeks, but the planning to get me to the wedding...
May 20, 2024 at 10:33 AM -
Sean 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 have no idea of the motivation of therapists who might use this questionnaire. I would hope they intend to be helpful. But there is...
May 20, 2024 at 10:33 AM -
Sean 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.
I know exactly how it will be used. Instead of looking at overall exertion, the thing that matters, you will have those whose entire...
May 20, 2024 at 10:33 AM -
Sean 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.
As an example if some app like Visible suddenly announced it was selling pwme data to eg Sharpe, Chalder, Wessely or White everyone...
May 20, 2024 at 10:32 AM -
Sean 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.
I'm worried about this because I'm coming at it from a professional perspective. In seeing how apparently under some dodgy excuse (I...
May 20, 2024 at 10:32 AM -
Sean 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 it should be up to the pwME to decide what information about their activity levels they want to divulge. I find questionnaires...
May 20, 2024 at 10:31 AM
