Recent Activity
Activity stream for all registered members at Science for ME.
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alktipping liked Mij's post in the thread ME/CFS services in the United Kingdom.
I'm not sure where to post this for pwME in the U.K Some might not be aware of this code for housebound patients? Code 13CA [MEDIA]
Jun 11, 2024 at 10:29 PM -
Lou B Lou liked Trish's post in the thread : TV casting call for people living with ME/CFS.
Thanks Joan. Very good reply.
Jun 11, 2024 at 10:29 PM -
Lou B Lou 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 11, 2024 at 10:29 PM -
bobbler 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 11, 2024 at 10:29 PM -
Kitty 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 11, 2024 at 10:27 PM -
Lou B Lou liked Trish's post in the thread : TV casting call for people living with ME/CFS.
How bizarre. Can you make any more of what the email said public?
Jun 11, 2024 at 10:27 PM -
Lou B Lou liked Joan Crawford's post in the thread : TV casting call for people living with ME/CFS.
Hello, Has anyone else received email regarding "TV casting call for people living with ME/CFS" ? To do with running and jogging and...
Jun 11, 2024 at 10:27 PM -
Kitty 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 11, 2024 at 10:27 PM -
Kitty replied to 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 11, 2024 at 10:27 PM -
Lou B Lou 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 11, 2024 at 10:24 PM -
Lou B Lou 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 11, 2024 at 10:24 PM -
Kitty 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 11, 2024 at 10:12 PM -
Kitty 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 11, 2024 at 10:11 PM
