Recent Activity
Activity stream for all registered members at Science for ME.
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bobbler liked rvallee'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?.
It sure would be great if there was a better term, because it's a really important concept. I don't think it's common in English, but...
Jun 3, 2024 at 4:03 AM -
bobbler liked MrMagoo'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?.
A lot of definitions of malaise are “a feeling of unease” which can be read more than one way. Certainly if you feel ill, you are not at...
Jun 3, 2024 at 4:02 AM -
bobbler liked DigitalDrifter'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?.
They mean different things to different people but I think diluting the criteria to allow for fatigue after exercise can be highly...
Jun 3, 2024 at 4:02 AM -
bobbler liked MrMagoo'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?.
I agree, I don’t think it’s used “medically” and in general parlance Ithink it’s used interchangeably with fatigue
Jun 3, 2024 at 4:01 AM -
bobbler 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?.
That's interesting, but nope nothing like my PEM, which has been far more like you suddenly get eg glandular fever. In the earlier years...
Jun 3, 2024 at 4:01 AM -
forestglip replied to the thread 2024: NIH National Institutes of Health - ME/CFS Symposium on Intramural study - 2 May.
Health Rising blog about the symposium:...
Jun 3, 2024 at 3:44 AM -
bobbler replied to the thread Women forced to attend up to 10 GP appointments to get menopause diagnosis, study finds.
Some of it might be good GPs etc checking it isn't something else, but given sending people away to see if they come back has been...
Jun 3, 2024 at 3:43 AM -
forestglip replied to the thread USA: NIH National Institutes of Health news - next events May 28 2024.
Quote from Nath: From the excellent Health Rising post just published covering the NIH symposium about the intramural study.
Jun 3, 2024 at 3:39 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.
I’m happy with the reports which visible spits out, and I can request further CSV symptom data extracts if I wish. I could do that and...
Jun 3, 2024 at 3:37 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.
I’ve used free trackers like Bearable in the past to track symptoms. I often can’t speak so an app is preferable. There’s an issue...
Jun 3, 2024 at 3:36 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.
In a sense maybe, but what we normally call research is investigation that reliably transfers to a general situation. And when it comes...
Jun 3, 2024 at 3:36 AM -
bobbler 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.
To me, there might also be an opportunity to work on something sooner rather than later, iron out as many of the creases as we can, and...
Jun 3, 2024 at 3:35 AM -
Trish liked Amw66's post in the thread Maeve Boothby O'Neill - articles about her life, death and inquest.
[MEDIA] #InquestUpdate my daughter died from medical and local authority neglect of #VerySevereME Oct 2021. 2 weeks full hearings...
Jun 3, 2024 at 3:34 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 am right that Keith is a patient arent I? just suddenly had a moment of doubt but dont i remember that Wessely etc discounted his...
Jun 3, 2024 at 3:34 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.
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 3, 2024 at 3:34 AM
