Recent Activity
Activity stream for all registered members at Science for ME.
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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 -
Missense liked Evergreen's post in the thread Powered wheelchair that tilts for indoors and garden path UK.
It is exciting! Bit daunting too. We won't have funding but Mr Evergreen has a job and we will pay for what I need, within reason....
Jun 12, 2024 at 3:15 AM -
bobbler replied to the thread What can we learn from the Post Office scandal publicity (including TV)?.
I think it needs a few different angles, and suspect the less documentary ones are the breakthrough points. We are slightly different to...
Jun 12, 2024 at 3:15 AM
