Recent Activity
Activity stream for all registered members at Science for ME.
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Kitty liked Mij's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
Admitting they don't understand M.E or that they haven't figured it out yet is not the same as dismissing the patient. I can respect that.
Jun 12, 2024 at 10:50 PM -
Kitty liked Solstice's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
The guy that first diagnosed me told me there was nothing he could to help me. Which is devastating but also absolutely fair imo. I...
Jun 12, 2024 at 10:50 PM -
Kitty liked Jonathan Edwards's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
EDS is a group of monogenic genetic diseases, most of which we know the gene for and are easily tested for. There are 13 main types....
Jun 12, 2024 at 10:49 PM -
alktipping 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 10:49 PM -
Kitty liked Jonathan Edwards's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
I think that is fair. So I guess that my conclusion that there is an urgent need for some sort of consensus amongst the medical...
Jun 12, 2024 at 10:49 PM -
alktipping 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 10:49 PM -
Kitty liked Yann04's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
Out of curiosity what’s the issue with EDS. Isn’t it a group of genetically testable diseases — which would make the diagnosis...
Jun 12, 2024 at 10:49 PM -
Kitty liked Mij's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
A couple of days ago on X there was a patient dx with M.E who posted information about CCI/AAI, MCAS, EDS that received many replies...
Jun 12, 2024 at 10:49 PM -
Kitty liked Solstice's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
Also, if they don't want us shopping for help, then get us the help we need through the proper channels.
Jun 12, 2024 at 10:49 PM -
Kitty liked Trish's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
If all the patient organisations, organisations like NIH, and the doctors whose advice they promote would stop suggesting EDS, MCAS,...
Jun 12, 2024 at 10:48 PM -
MrMagoo liked bobbler's post in the thread : TV casting call for people living with ME/CFS.
I find in this situation using the term with these people of ‘you are out of date and working based on old and harmful guidelines and...
Jun 12, 2024 at 10:48 PM -
Kitty 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 10:47 PM -
alktipping 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 10:47 PM -
Kitty 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 10:47 PM
