Recent Activity
Activity stream for all registered members at Science for ME.
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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 -
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.
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 2:58 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.
Most people with a 'proper' chronic illness have an annual review, don't they? I have them for two different conditions, neither of...
Jun 12, 2024 at 2:58 AM -
Missense liked FMMM1's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
If a public service [NHS England] is launched then it's reasonable to ask that appropriate monitoring is included --- in fact that's...
Jun 12, 2024 at 2:57 AM
