Recent Activity
Activity stream for all registered members at Science for ME.
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NelliePledge 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 2, 2024 at 8:51 PM -
Yann04 replied to the thread Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al.
Health Rising (Court Johnson) just released a piece on the study and it’s findings. While I think parts of it were well written, I was...
Jun 2, 2024 at 8:51 PM -
Trish replied to 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 2, 2024 at 8:50 PM -
Trish 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 2, 2024 at 8:50 PM -
Kitty 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 2, 2024 at 8:48 PM -
Kitty 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 2, 2024 at 8:48 PM -
Kitty liked Jonathan Edwards'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 agree absolutely on this, but it need to be done as a research exercise to see what predicts what.
Jun 2, 2024 at 8:48 PM -
Kitty 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 2, 2024 at 8:48 PM -
Kitty 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 2, 2024 at 8:48 PM -
Kitty 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 2, 2024 at 8:47 PM -
Kitty liked Jonathan Edwards's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
The monitoring should be possible, but what would you do with it? For asthma and diabetes we have well documented treatments that...
Jun 2, 2024 at 8:47 PM -
Kitty 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.
People with other chronic conditions such as asthma and diabetes are self monitoring and recording data on apps which help both with the...
Jun 2, 2024 at 8:47 PM -
Kitty 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.
Crossposted with Adrian. I think Adrian's idea is worth exploring. It wouldn't necessarily produce a long readout, rather, if I...
Jun 2, 2024 at 8:47 PM
