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  1. AliceLily
    Post

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    For me, OI and ME/PEM have always run along side each other at the same level. My ME is now a managed moderate and so is the OI. I remember my...
    Post by: AliceLily, Apr 2, 2024 in forum: Post-Exertional malaise and fatigue
  2. AliceLily
    Post

    Covid-19 vaccination experiences

    I had my 6th Pfizer vaccine on Saturday, 2 days ago. I was told that it was the same vaccine I had for my 5th jab. I had a slight headache for 2...
    Post by: AliceLily, Jan 29, 2024 in forum: Epidemics (including Covid-19, not Long Covid)
  3. AliceLily
    Post

    Muscle abnormalities worsen after post-exertional malaise in long COVID, 2023/4, Wüst, van Vugt, Appelman et al

    I wonder what affect this would have on our kidney function. I came across a couple of old blood tests from 2012 this morning that had low eGFR. I...
    Post by: AliceLily, Jan 16, 2024 in forum: Long Covid research
  4. AliceLily
    Post

    Covid-19 vaccination experiences

    I've been holding out from getting my next Covid vaccine until the end of this month due to an operation coming up at the end of Feb/early March....
    Post by: AliceLily, Jan 15, 2024 in forum: Epidemics (including Covid-19, not Long Covid)
  5. AliceLily
    Post

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    Yes, for me the delayed PEM is the worst and brings new symptoms I haven't experienced before. The new symptoms I am talking about only occurred...
    Post by: AliceLily, Jan 4, 2024 in forum: Post-Exertional malaise and fatigue
  6. AliceLily
    Post

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    Yes. To me, ME is PEM and revolves always around it. Pacing will help eventually get a better quality of life and fewer severe PEM episodes. It...
    Post by: AliceLily, Dec 28, 2023 in forum: Post-Exertional malaise and fatigue
  7. AliceLily
    Post

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    Regarding malaise. I understand malaise is a term some PWME don't like. For me, I would be extremely worried over a loved one who has taken to...
    Post by: AliceLily, Dec 24, 2023 in forum: Post-Exertional malaise and fatigue
  8. AliceLily
    Post

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    Yes, PEM has exhaustion/fatigue/weakness, but it is one part of many significant symptoms which malaise covers. That's why I don't like the use of...
    Post by: AliceLily, Dec 24, 2023 in forum: Post-Exertional malaise and fatigue
  9. AliceLily
    Post

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    In myself, I think PEM is triggered long before PEF would have an impact due to the innate problem we have with this illness? Thanks for...
    Post by: AliceLily, Dec 23, 2023 in forum: Post-Exertional malaise and fatigue
  10. AliceLily
    Post

    Sleep problems in ME/CFS - discussion thread

    It's always been insomnia for me with my ME. I hate to think how many hours I have lost over the period of 22 years from very severe ME until now....
    Post by: AliceLily, Dec 19, 2023 in forum: Sleep Disturbance
  11. AliceLily
    Post

    The idea that ME subtypes explain treatments only working for some—thoughts?

    I think the differences will be how we caught ME and then PEM whether it be subtle PEM or very severe PEM will be there in all to some degree,...
    Post by: AliceLily, Nov 3, 2023 in forum: General ME/CFS discussion
  12. AliceLily
    Post

    Do you believe that “viral persistence” is the cause of ongoing MECFS and LC?

    I've been tested twice for EBV and both times tested negative for past or present.
    Post by: AliceLily, Nov 1, 2023 in forum: Possible causes and predisposing factor discussion
  13. AliceLily
    Post

    If you had to guess ME/CFS cause, what'd you say?

    I think in my case of ME it was an immune reaction to an antibiotic which caused permanent metabolic change in homeostasis which then set of pro...
    Post by: AliceLily, Oct 27, 2023 in forum: Possible causes and predisposing factor discussion
  14. AliceLily
    Post

    If you had to guess ME/CFS cause, what'd you say?

    My early ME was similar in that I was still able to work full time, though I was having some symptoms. Unfortunately, I didn't know I had ME back...
    Post by: AliceLily, Oct 26, 2023 in forum: Possible causes and predisposing factor discussion
  15. AliceLily
    Post

    Cochrane: Physical interventions to interrupt or reduce the spread of respiratory viruses, 2023, Jefferson et al

    I'm one of those rare people still wearing a mask when I go out. I haven't had Covid. I go out nearly every day catching a bus or a train. I wear...
    Post by: AliceLily, Oct 24, 2023 in forum: Epidemics (including Covid-19, not Long Covid)
  16. AliceLily
    Post

    If you had to guess ME/CFS cause, what'd you say?

    Interesting what you have written here @Creekside Excuse me though, even though I have had ME for over 25 years I am still trying to get my head...
    Post by: AliceLily, Oct 19, 2023 in forum: Possible causes and predisposing factor discussion
  17. AliceLily
    Post

    If you had to guess ME/CFS cause, what'd you say?

    Change in brain function was my earliest debilitating symptom of ME long before the PEM got significant. The earliest symptom before that was two...
    Post by: AliceLily, Oct 19, 2023 in forum: Possible causes and predisposing factor discussion
  18. AliceLily
    Post

    If you had to guess ME/CFS cause, what'd you say?

    I've had PTSD from my experience of the ME PEM. I've had ME for over 25 years and been to all levels of ME except needing tube feeding. PEM is the...
    Post by: AliceLily, Oct 17, 2023 in forum: Possible causes and predisposing factor discussion
  19. AliceLily
    Post

    What does a good day look like for you?

    19 years after falling sick with very severe ME and now at moderate level I can now get the sewing machine out and do a bit of sewing! I still...
    Post by: AliceLily, Aug 30, 2023 in forum: General ME/CFS discussion
  20. AliceLily
    Post

    Plasma metabolomics reveals disrupted response and recovery following maximal exercise in ME/CFS, Arnaud Germain, Maureen R. Hanson et al, 2022

    Just dropping in for a short bit - so much going on and trying to conserve mental energy. I just reread the above old post of mine and I need to...
    Post by: AliceLily, Jul 18, 2023 in forum: ME/CFS research
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