Recent Activity
Activity stream for all registered members at Science for ME.
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JellyBabyKid liked Joan Crawford's post in the thread : TV casting call for people living with ME/CFS.
Dear Joan, I’m contacting you from Electric Robin, an award-winning UK-based creative production company. You can find out more about...
Jun 12, 2024 at 6:17 AM -
JellyBabyKid 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.
If you wanted to push it and get really proactive then it could be used by better GPs to signpost help and when to think of it. The...
Jun 12, 2024 at 6:14 AM -
JellyBabyKid liked Sean's post in 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 6:11 AM -
JellyBabyKid 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 6:10 AM -
JellyBabyKid 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 6:09 AM -
JellyBabyKid 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 6:07 AM -
JellyBabyKid 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 6:07 AM -
JellyBabyKid 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.
My GP practice does both my reviews, even though I'm also reviewed by the rheumatology team. I think it's quite normal for primary care...
Jun 12, 2024 at 6:04 AM -
JellyBabyKid 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.
If those are trained well, and not from some guideline eg put together by Clare Gerada, then it gets around clinics being able to claim...
Jun 12, 2024 at 6:00 AM -
Wyva liked MrMagoo's post in the thread : TV casting call for people living with ME/CFS.
But exercise is good! Just because you can’t do it, or it makes you incredibly unwell isn’t a reason to slack off! I so wish I was a...
Jun 12, 2024 at 5:57 AM -
Wyva liked Kitty's post in the thread : TV casting call for people living with ME/CFS.
Blimey, they're clueless, aren't they? I'd question the professionalism of a company that can't even be bothered to read a few...
Jun 12, 2024 at 5:56 AM -
bobbler liked Sean's post in the thread ETUDE: Encompassing Training in fUnctional Disorders across Europe.
"An etude is a short, tricky tune that a musician plays mainly for practice or to demonstrate skill."
Jun 12, 2024 at 5:54 AM
