Recent Activity
Activity stream for all registered members at Science for ME.
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Atlas liked Janna Moen PhD's post in the thread Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al.
This is a very uninformed answer. He appears to be conflating the concept of reward-prediction error in dopamine processing and the...
Jun 3, 2024 at 3:26 AM -
bobbler 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 3, 2024 at 3:17 AM -
bobbler replied to the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
this
Jun 3, 2024 at 3:16 AM -
bobbler 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 3:11 AM -
bobbler 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 3:11 AM -
bobbler 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 3, 2024 at 3:10 AM -
bobbler 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 3, 2024 at 3:10 AM -
bobbler 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 3, 2024 at 3:09 AM -
bobbler replied to the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
that's the safest and most appropriate one, and also closest to an actual 'medical' appointment. ie pointing people to how to use such...
Jun 3, 2024 at 3:09 AM -
wingate liked Jaybee00's post in the thread Lou Gehrig Day—ALS (USA) June 2.
MLB commemorates 4th annual Lou Gehrig Day https://www.mlb.com/news/mlb-commemorates-4th-annual-lou-gehrig-day...
Jun 3, 2024 at 2:46 AM -
bobbler 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 3, 2024 at 2:45 AM -
bobbler 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 3, 2024 at 2:44 AM -
bobbler 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.
I've not been following this debate but it occurs to me that developing a new PROM could be the wrong approach. A PROM is basically a...
Jun 3, 2024 at 2:44 AM -
bobbler replied to the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
they've separated cause and effect (immediate and delayed). And the exact thing that is not required in ME/CFS is for someone to...
Jun 3, 2024 at 2:43 AM
