Recent Activity
Activity stream for all registered members at Science for ME.
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Sean liked bobbler's post in the thread ETUDE: Encompassing Training in fUnctional Disorders across Europe.
well that is flying high on buzzword bingo! 'in order to educate a new generation of interdisciplinary creative early stage...
Jun 12, 2024 at 5:19 AM -
Sean liked Wyva's post in the thread USA: Centers for Disease Control (CDC) - Post Covid Conditions: Interim Guidance, June 2021, updated June 2024.
I kind of skimmed through it. Is it really just two pages? I somehow thought the interim guidance had more info than this one, but I may...
Jun 12, 2024 at 5:13 AM -
Sean liked Wyva's post in the thread USA: Centers for Disease Control (CDC) - Post Covid Conditions: Interim Guidance, June 2021, updated June 2024.
The page of the original interim guidance seems to be deleted now and there is a new informational page for long covid on the CDC...
Jun 12, 2024 at 5:13 AM -
Sean attached a file to the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
There was a 2.5 year long-term follow-up paper. Some of the control group did cross-over and try CBT/GET after the trial ended. But...
Jun 12, 2024 at 5:13 AM -
rainy liked Sean's post in the thread What can we learn from the Post Office scandal publicity (including TV)?.
While we may not yet be in a position to do something similar yet, this has certainly help expose systemic failures and cruelty in our...
Jun 12, 2024 at 4:58 AM -
Turtle liked MelbME'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?.
Yes this is very much in the space we are looking. Urine output, urea cycle (nitrogen metabolism), hormone production, blood flow,...
Jun 12, 2024 at 4:56 AM -
Turtle liked SNT Gatchaman'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?.
@MelbME this is only a poster abstract, unreplicated, and I don't know what ME criteria was used, but allegedly 82% of patients had...
Jun 12, 2024 at 4:56 AM -
bobbler 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.
To be honest, having a chat with a professional might just be what you need. I knew I was in trouble for a few years, but work,...
Jun 12, 2024 at 4:53 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.
I was being somewhat facetious, they wouldn’t care for reported outcomes 3 years after last being seen in the clinic. The PROMS are to...
Jun 12, 2024 at 4:51 AM -
Sean 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.
I think that's rather different to annual reviews, which are by definition routine. They're not designed to manage a change in...
Jun 12, 2024 at 4:51 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.
Not necessarily PROM specifically - as those just measure delivery of something but something simple and more appropriate annually that...
Jun 12, 2024 at 4:50 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 am finding the idea of discussing the pros and cons /potential catches (my biggest concern is understanding the power base behind GP...
Jun 12, 2024 at 4:50 AM
