Recent Activity
Activity stream for all registered members at Science for ME.
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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 -
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.
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 4:50 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.
Care and support plans...
Jun 12, 2024 at 4:49 AM
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bobbler 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 4:49 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.
Once a year review in primary care is the NICE recommendation...
Jun 12, 2024 at 4:49 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.
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 4:49 AM -
Hutan 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 4:48 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.
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 4:48 AM -
Sean 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 4:48 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.
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 4:48 AM -
Turtle 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 4:47 AM -
Turtle liked csinclair02's post in the thread : TV casting call for people living with ME/CFS.
Runners? What the hell. Even when my condition was very mild, I couldn't run.
Jun 12, 2024 at 4:46 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 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 4:46 AM -
Turtle 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 4:46 AM -
Turtle 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 4:46 AM
