Recent Activity
Activity stream for all registered members at Science for ME.
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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 -
Kitty liked Adrian's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
How about a summary of how someones symptoms change with activities written in a short paragraph and derived from data recorded at the...
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.
Detailed recording ought to be useful for research but the issue here is how people should be assessed in routine practice. Until we...
Jun 2, 2024 at 8:46 PM -
NelliePledge 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 8:46 PM -
Turtle liked Mij's post in the thread Women forced to attend up to 10 GP appointments to get menopause diagnosis, study finds.
Exclusive: Menopause expert warns women are enduring ‘needless barriers’ to treatment and are ‘suffering and confused’ Women are being...
Jun 2, 2024 at 8:46 PM -
Kitty liked Adrian's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
My point though is more that the use of trackers. AI really enables very different interfaces and ways to interact so its not just say...
Jun 2, 2024 at 8:46 PM
