Recent Activity
Activity stream for all registered members at Science for ME.
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NelliePledge liked Andy's post in the thread Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al.
Which we now know is BS, given all the effort preference garbage rolled out by Walitt. He hasn't earned my respect and trust, in fact...
Jun 3, 2024 at 10:47 AM -
MEMarge liked Lou B Lou's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
But it's not and never will be collaborative. Sarah Tyson and Russell Fleming don't do collaboration. They presume to speak for us,...
Jun 3, 2024 at 10:46 AM -
MEMarge liked JellyBabyKid's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
This is a really good point. None of this should be in any way antagonistic, it should be completely collaborative.
Jun 3, 2024 at 10:46 AM -
MEMarge 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’m happy with the reports which visible spits out, and I can request further CSV symptom data extracts if I wish. I could do that and...
Jun 3, 2024 at 10:45 AM -
MEMarge 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’ve used free trackers like Bearable in the past to track symptoms. I often can’t speak so an app is preferable. There’s an issue...
Jun 3, 2024 at 10:45 AM -
MEMarge liked JemPD'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 right that Keith is a patient arent I? just suddenly had a moment of doubt but dont i remember that Wessely etc discounted his...
Jun 3, 2024 at 10:45 AM -
MEMarge liked Trish's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
They surely will have seen our letters and are free to read this thread.
Jun 3, 2024 at 10:45 AM -
MEMarge liked JellyBabyKid's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
Oh. Oh heck. Stupid question, but has the S4ME letter been sent to Keith and Russell as well as the trustees..? Keith seems to be...
Jun 3, 2024 at 10:45 AM -
MEMarge liked Trish's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
Every pwME's efforts at pacing is a research exercise carried out by the pwME as we navigate every day's activity and rest. All I'm...
Jun 3, 2024 at 10:44 AM -
Peter Trewhitt liked Paraprosdokian's post in the thread Preprint Transfer of IgG from Long COVID patients induces symptomology in mice, 2024, Vidarsson+.
I was quite excited when I saw this paper because if it is correct it would be a big step towards understanding the cause of LC (and...
Jun 3, 2024 at 10:44 AM
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MEMarge liked JemPD's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
I completely agree, but the challenge is that Sarah Tyson... IS a patient. And the mother of another patient. Russell Fleming is a...
Jun 3, 2024 at 10:44 AM -
Peter Trewhitt liked MelbME's post in the thread Preprint Transfer of IgG from Long COVID patients induces symptomology in mice, 2024, Vidarsson+.
They had a mouse for every sample. Makes me think they planned to do one person per mouse but then realised they forgot to account for...
Jun 3, 2024 at 10:44 AM -
MEMarge liked Trish'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 I would have found it very helpful when I was newly learning to cope with symptoms and crashes and still working part time. It...
Jun 3, 2024 at 10:44 AM -
MEMarge liked JellyBabyKid's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
This really gets to me. Paternalism at its worst. Michael J. Fox says “Parkinson's patients are the experts on what we have. We have a...
Jun 3, 2024 at 10:44 AM
