Recent Activity
Activity stream for all registered members at Science for ME.
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alktipping 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 11:29 PM -
oldtimer liked poetinsf's post in the thread A question about mitochondria.
I reject mitochondrial theory on the account that it doesn't explain PEM. If the problem is energy production, the result should be...
Jun 2, 2024 at 11:28 PM -
alktipping 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 11:28 PM -
alktipping 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 11:27 PM -
alktipping 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 11:27 PM -
alktipping 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 11:26 PM -
Eddie liked MelbME's post in the thread Open Medicine Foundation (OMF).
If it is effective then it could be doing many things. We will have a better understanding after the study based on the design. If we...
Jun 2, 2024 at 11:24 PM -
Eddie liked MelbME's post in the thread Open Medicine Foundation (OMF).
Not convincing data in ME yet we hope to provide the answers to this question by testing sham, saline, hypotonic saline and hypertonic...
Jun 2, 2024 at 11:23 PM -
alktipping 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 11:22 PM -
alktipping 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 11:22 PM -
NelliePledge replied to the thread [Thought experiment] In a random cohort of 100 ME/CFS patients (recent diagnosis via CCC), what can you know about them with 90%+ certainty?.
I don’t see why malaise couldn’t be understood in the same way in English, probably because I knew the French I’ve never felt it to be...
Jun 2, 2024 at 11:22 PM -
alktipping 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.
I'd say predictably those comments have fallen on deaf ears. Nothing has moved on from 'the therapist knows best' and 'the rehab...
Jun 2, 2024 at 11:21 PM -
alktipping 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.
Yes Adrian some of us have flagged up that use of trackers should be considered and there are symptom tracking apps like visible (which...
Jun 2, 2024 at 11:21 PM -
alktipping 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 2, 2024 at 11:21 PM
