Recent Activity
Activity stream for all registered members at Science for ME.
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Kitty liked Jonathan Edwards's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
Yeah but nobody knows what. And if you seek hard enough you will find all sorts of made up stuff. At some point everyone involved has to...
Jun 12, 2024 at 10:51 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.
I was being somewhat facetious, they wouldn’t care for reported outcomes 3 years after last being seen in the clinic. The PROMS are to...
Jun 12, 2024 at 10:50 PM -
Kitty liked Yann04's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
Hmmm. I know most of this community is of the opinion that the diagnoses such as MCAS and EDSh are not legitimate. But I’m wondering...
Jun 12, 2024 at 10:50 PM -
alktipping 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.
I think that's rather different to annual reviews, which are by definition routine. They're not designed to manage a change in...
Jun 12, 2024 at 10:50 PM -
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
