Recent Activity

Activity stream for all registered members at Science for ME.

  1. Missense 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 3:21 AM
  2. Missense liked oldtimer'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?.

    PEM pronounced as an acronym (rather than the initialised P-E-M) sounds silly to my ear. When I first heard it I thought it must be a...

    Jun 12, 2024 at 3:20 AM
  3. 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?.

    Me too! That's part of it, but it also feels exclusionary because most people won't know what it means—it even stumps me sometimes...

    Jun 12, 2024 at 3:20 AM
  4. 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?.

    This is now getting really far off topic, sorry mods, but i wonder if one's accent affects it. For example for me to say the letters...

    Jun 12, 2024 at 3:20 AM
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
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