Recent Activity
Activity stream for all registered members at Science for ME.
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Missense liked MrMagoo's post in the thread : TV casting call for people living with ME/CFS.
I really, really hope you ge a polite apology. I’m sure they think they’re being brilliantly inclusive. I wonder whether they would be...
Jun 12, 2024 at 3:05 AM -
Missense liked Trish's post in the thread : TV casting call for people living with ME/CFS.
Thanks Joan. Very good reply.
Jun 12, 2024 at 3:05 AM -
Missense 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 3:05 AM -
Missense 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 3:03 AM -
Missense 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 love it then!:) apologies for being slow there
Jun 12, 2024 at 3:02 AM -
Missense 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.
Nope, my asthma yearly review specifically includes a plan, and written so you take it away, for when you have an asthma attack. And the...
Jun 12, 2024 at 3:02 AM -
Missense 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 3:01 AM -
Missense 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 3:00 AM -
Missense 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 3:00 AM -
Missense 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 3:00 AM -
horton6 liked Amw66's post in the thread United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media.
From a post on X Millie is having PEG tube fitted today and nurses are trying their best to make this go as smoothly as possible .
Jun 12, 2024 at 3:00 AM -
Missense 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.
Yes, I was thinking it could be done by a practice nurse, like the diabetes, asthma etc
Jun 12, 2024 at 2:59 AM -
Missense 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 2:59 AM -
Missense 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.
Maybe there should be an annual review PROMS
Jun 12, 2024 at 2:58 AM -
Missense 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.
Once a year review in primary care is the NICE recommendation...
Jun 12, 2024 at 2:58 AM
