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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.
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 -
Missense 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.
The PACE study did do some longer term follow up. If my memory is correct wasn’t there a two year follow up, and didn’t they start the...
Jun 12, 2024 at 2:57 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.
Definitely. It should be the only monitoring that counts. Particularly until we ever get past the phase where treatments and measures...
Jun 12, 2024 at 2:57 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 think it would be a good question for the APPG - what about long term 3,5,10 year monitoring of ME? For context, most clinics...
Jun 12, 2024 at 2:57 AM -
Missense liked NelliePledge's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
The answer to any Parliamentary Question is simple. It was a project involving people with ME and funded by the ME Association. What...
Jun 12, 2024 at 2:57 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.
Sounds like a good idea. I attend these meetings -...
Jun 12, 2024 at 2:56 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.
Delivery plan!...
Jun 12, 2024 at 2:56 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.
The government thingie, that got put on hold when the election was called. I'm so brain fogged I can't even think of a term to search...
Jun 12, 2024 at 2:56 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.
Action plan?
Jun 12, 2024 at 2:56 AM
