Recent Activity
Activity stream for all registered members at Science for ME.
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Sean attached a file to the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
There was a 2.5 year long-term follow-up paper. Some of the control group did cross-over and try CBT/GET after the trial ended. But...
Jun 12, 2024 at 5:13 AM -
rainy liked Sean's post in the thread What can we learn from the Post Office scandal publicity (including TV)?.
While we may not yet be in a position to do something similar yet, this has certainly help expose systemic failures and cruelty in our...
Jun 12, 2024 at 4:58 AM -
Turtle liked MelbME's post in 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?.
Yes this is very much in the space we are looking. Urine output, urea cycle (nitrogen metabolism), hormone production, blood flow,...
Jun 12, 2024 at 4:56 AM -
Turtle liked SNT Gatchaman's post in 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?.
@MelbME this is only a poster abstract, unreplicated, and I don't know what ME criteria was used, but allegedly 82% of patients had...
Jun 12, 2024 at 4:56 AM -
bobbler 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.
To be honest, having a chat with a professional might just be what you need. I knew I was in trouble for a few years, but work,...
Jun 12, 2024 at 4:53 AM -
Sean 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 was being somewhat facetious, they wouldn’t care for reported outcomes 3 years after last being seen in the clinic. The PROMS are to...
Jun 12, 2024 at 4:51 AM -
Sean liked Kitty'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 that's rather different to annual reviews, which are by definition routine. They're not designed to manage a change in...
Jun 12, 2024 at 4:51 AM -
Sean liked bobbler's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
Not necessarily PROM specifically - as those just measure delivery of something but something simple and more appropriate annually that...
Jun 12, 2024 at 4:50 AM -
Sean liked bobbler'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 finding the idea of discussing the pros and cons /potential catches (my biggest concern is understanding the power base behind GP...
Jun 12, 2024 at 4:50 AM -
Sean liked Kitty's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
My GP practice does both my reviews, even though I'm also reviewed by the rheumatology team. I think it's quite normal for primary care...
Jun 12, 2024 at 4:50 AM -
Sean 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.
Care and support plans...
Jun 12, 2024 at 4:49 AM
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bobbler liked Peter Trewhitt's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
The PACE study did do some longer term follow up. If my memory is correct wasn’t there a two year follow up, and didn’t they start the...
Jun 12, 2024 at 4:49 AM -
Sean 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.
Once a year review in primary care is the NICE recommendation...
Jun 12, 2024 at 4:49 AM -
Sean liked bobbler's post in the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023.
If those are trained well, and not from some guideline eg put together by Clare Gerada, then it gets around clinics being able to claim...
Jun 12, 2024 at 4:49 AM
