Recent Activity
Activity stream for all registered members at Science for ME.
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MrMagoo attached a file to the thread : TV casting call for people living with ME/CFS.
The NICE guidance states exercise- physical activity should be overseen by ME/CFS specialist...
Jun 12, 2024 at 1:59 PM
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MeSci 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 1:58 PM -
Yann04 liked Nightsong's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
I suspect the majority of patients will just assume that a private specialist will be better informed, more qualified and less time-poor...
Jun 12, 2024 at 1:58 PM -
Yann04 liked Lou B Lou's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
The fault lies with the Drs who feel free to ridicule, denigrate, mock, to express and incite hatred towards certain groups of patients....
Jun 12, 2024 at 1:57 PM -
Turtle liked Nightsong's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
I suspect the majority of patients will just assume that a private specialist will be better informed, more qualified and less time-poor...
Jun 12, 2024 at 1:57 PM -
Wyva liked Jonathan Edwards's post in the thread United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media.
I absolutely agree with the first half of what is said. But it will be completely ignored because of the second half. We need to stick...
Jun 12, 2024 at 1:57 PM -
MeSci 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 1:56 PM -
geminiqry 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 1:56 PM -
MeSci 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 1:55 PM -
livinglighter liked Amw66's post in the thread United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media.
Significant thread on X from Dr Claire Taylor [MEDIA] If someone is bedbound with #longcovid & hospitalised, withholding urine...
Jun 12, 2024 at 1:55 PM -
MeSci 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 1:54 PM -
Kitty replied to the thread Powered wheelchair that tilts for indoors and garden path UK.
In my experience, the big ones are equally mediocre and uninspired!* But they work reliably, and in some ways there's not a lot to...
Jun 12, 2024 at 1:52 PM -
Turtle replied to the thread Illness perceptions, experiences of stigma and engagement in (FND): exploring the role of multidisciplinary group education sessions 2024 Butler et al.
For years and years FND was conversion and now they can educate the patients out of it? Just 21% of patients (35 out of 166) did all 3...
Jun 12, 2024 at 1:51 PM -
forestglip liked JemPD's post in the thread : TV casting call for people living with ME/CFS.
All of the above. I think they'll have no trouble at all finding someone. Someone who is either very mildly affected (eg somewhat...
Jun 12, 2024 at 1:47 PM -
JemPD liked Lou B Lou's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
The fault lies with the Drs who feel free to ridicule, denigrate, mock, to express and incite hatred towards certain groups of patients....
Jun 12, 2024 at 1:44 PM
