Recent Activity
Activity stream for all registered members at Science for ME.
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Trish replied to the thread : TV casting call for people living with ME/CFS.
This sort of ignorance is one reason why I don't like ME/CFS being described as a disability. Better, I think, to describe it as a...
Jun 12, 2024 at 8:30 AM -
Trish liked MrMagoo's post in the thread : TV casting call for people living with ME/CFS.
But exercise is good! Just because you can’t do it, or it makes you incredibly unwell isn’t a reason to slack off! I so wish I was a...
Jun 12, 2024 at 8:25 AM -
Trish liked csinclair02's post in the thread : TV casting call for people living with ME/CFS.
Runners? What the hell. Even when my condition was very mild, I couldn't run.
Jun 12, 2024 at 8:25 AM -
Trish liked Kitty's post in the thread : TV casting call for people living with ME/CFS.
Blimey, they're clueless, aren't they? I'd question the professionalism of a company that can't even be bothered to read a few...
Jun 12, 2024 at 8:25 AM -
Trish liked Eddie's post in the thread Variants in the Kallikrein Gene Family and Hypermobile Ehlers-Danlos Syndrome.
Abstract Hypermobile Ehlers-Danlos syndrome (hEDS) is a common heritable connective tissue disorder that lacks a known genetic...
Jun 12, 2024 at 8:24 AM -
HolyScrod liked Eddie's post in the thread Variants in the Kallikrein Gene Family and Hypermobile Ehlers-Danlos Syndrome.
Abstract Hypermobile Ehlers-Danlos syndrome (hEDS) is a common heritable connective tissue disorder that lacks a known genetic...
Jun 12, 2024 at 8:23 AM -
Trish 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 8:22 AM -
MEMarge 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 8:20 AM -
SNT Gatchaman liked mango's post in the thread Trial Report Low Vasopressin in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2024, Huhmar/Bragée/Polo.
Patienternas törst ledde forskaren till viktig upptäckt https://www.bragee.se/patienternas-torst-ledde-till-viktig-upptackt
Jun 12, 2024 at 8:20 AM -
MEMarge 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 12, 2024 at 8:19 AM -
MEMarge liked NelliePledge's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
The answer to any Parliamentary Question is simple. It was a project involving people with ME and funded by the ME Association. What...
Jun 12, 2024 at 8:19 AM -
Trish replied to the thread Childhood, interrupted: 12-year-old Toby’s life with long Covid.
I agree there's cause for concern. Suggesting private treatment has something useful to offer for kids with Long Covid is wrong. Nobody...
Jun 12, 2024 at 8:18 AM
