Recent Activity
Activity stream for all registered members at Science for ME.
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Missense liked Mij'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'm not from the U.K but I always felt that PIP sounded too much like PEP (liveliness and energy).
Jun 12, 2024 at 3:20 AM -
Missense liked JemPD'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?.
eeewww me too! when people say pem as a word rather than using the 3 letters it gives me the creeps i have such an aversion to it i find...
Jun 12, 2024 at 3:19 AM -
Missense liked Sean'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?.
Always said pem, as in pen, just swap the n for an m. Keeping it short and simple is what acronyms are for, I thought. I don't have...
Jun 12, 2024 at 3:19 AM -
Missense liked forestglip'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 thought the norm was P-E-M until I heard someone during the NIH research roadmap webinar say "pem", and I've grown to prefer it...
Jun 12, 2024 at 3:19 AM -
Missense 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?.
That’s how I say it in my head when I read it too pee eee emm
Jun 12, 2024 at 3:19 AM -
Missense liked Kitty'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?.
No, I say P-E-M, and most of the people I know do. That might be the reason I think it's the norm and 'pem' sounds really weird, though! :D
Jun 12, 2024 at 3:18 AM -
Missense 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?.
So I've been saying it wrong all these years? Do you literally sound out post-exertional malaise every time you read PEM?
Jun 12, 2024 at 3:18 AM -
Missense liked Kitty'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 think malaise does it reasonably well, and post-exertional malaise does it better because it's more specific. I wouldn't have picked...
Jun 12, 2024 at 3:18 AM -
Missense 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?.
“Flu-like symptoms” does it for me. And certainly, if I were to write using medical language like pharyngitis, lymphadenopathy,...
Jun 12, 2024 at 3:18 AM -
Missense liked Creekside'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?.
When describing the ME symptom, I use "fatigue-like" instead of "fatigue", to clarify that it's not the same as other more common forms...
Jun 12, 2024 at 3:17 AM -
Missense liked bobbler'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?.
No worries at all!:)
Jun 12, 2024 at 3:17 AM -
Missense liked Ash's post in the thread Powered wheelchair that tilts for indoors and garden path UK.
On the tilt in space, I think even if it doesn’t go flat it’s very much better than a non tilt chair for back and neck comfort so I’d...
Jun 12, 2024 at 3:16 AM -
Missense liked Evergreen's post in the thread Powered wheelchair that tilts for indoors and garden path UK.
Well a rep is going to come with the OT in a few weeks' time, and they'll be bringing 2 powerchairs apparently, just to start getting an...
Jun 12, 2024 at 3:16 AM -
Missense liked Ash's post in the thread Powered wheelchair that tilts for indoors and garden path UK.
I think you’re right to think very carefully about what you want and need. What I’ve learned is that as a moderate to severely affected...
Jun 12, 2024 at 3:15 AM -
Missense liked Evergreen's post in the thread Powered wheelchair that tilts for indoors and garden path UK.
That's something to look forward to.
Jun 12, 2024 at 3:15 AM
