Recent Activity
Activity stream for all registered members at Science for ME.
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Sean liked Nightsong's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
The times that I've used the services of private specialists, it hasn't been about managing the core features of ME. I've needed help...
Jun 13, 2024 at 1:37 AM -
Sean 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 13, 2024 at 1:36 AM -
Sean 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 13, 2024 at 1:36 AM -
Michelle liked Medfeb's post in the thread National Academies: New Report Reviews Evidence on Long COVID Diagnosis, Risk, Symptoms, and Functional Impact for Patients 2024.
I haven't read the report but generally thought the panel members presenting got it. For instance, one acknowledged that doctors might...
Jun 13, 2024 at 1:36 AM -
Sean 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 13, 2024 at 1:36 AM -
Sean 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 13, 2024 at 1:36 AM -
Sean liked Lou B Lou's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
'The only problem with that is that it is not fair to ask people to ask for help when nobody knows what would help. They just end up...
Jun 13, 2024 at 1:35 AM -
Sean 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 13, 2024 at 1:35 AM -
Sean 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 13, 2024 at 1:35 AM -
Michelle liked Yann04's post in the thread National Academies: New Report Reviews Evidence on Long COVID Diagnosis, Risk, Symptoms, and Functional Impact for Patients 2024.
I find it so weird how people who meet ME diagnostic criteria after a covid infection are said to have long covid and not ME/CFS?...
Jun 13, 2024 at 1:34 AM -
MrMagoo liked Kitty's post in the thread : TV casting call for people living with ME/CFS.
:rofl: I was once collecting my dark grey bomber jacket from the cupboard behind the hairdresser's reception desk, after an hour of...
Jun 13, 2024 at 1:34 AM -
Hutan liked RaviHVJ's post in the thread 'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube [Goldsmiths].
I"d also be fascinated to know more about "the amazing advisory group of medical doctors and researchers who worked their butts off to...
Jun 13, 2024 at 1:33 AM
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Hutan liked RaviHVJ's post in the thread 'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube [Goldsmiths].
I sent a very polite email earlier this week to Dr Cefai laying out my concerns with the study - that she was studying a self-selecting...
Jun 13, 2024 at 1:32 AM -
Hutan liked Nightsong's post in the thread 'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube [Goldsmiths].
Some quotes from from a post to Agle's mailing list with details of the PI:
Jun 13, 2024 at 1:32 AM -
Michelle 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.
Just to go back to the question that started me on this train of thought: are people asked about capacity for work/ study/ etc in other...
Jun 13, 2024 at 1:31 AM
