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  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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)
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. AliceLily
    Post

    Covid-19 vaccination experiences

    I still haven't caught Covid either. Life sure is different now. I'm double masked when I go out. Most people aren't wearing a mask but I make a...
    Post by: AliceLily, May 12, 2023 in forum: Epidemics (including Covid-19, not Long Covid)
  15. AliceLily
    Post

    Covid-19 vaccination experiences

    I had my 5th Pfizer Covid vaccine 2 hours ago. It's been 9 months since my last dose so I am expecting stronger side effects like my first and...
    Post by: AliceLily, Apr 24, 2023 in forum: Epidemics (including Covid-19, not Long Covid)
  16. AliceLily
    Post

    High body temperature

    Same here @Paulie I ended up not wearing anything on top to bed after about 7 years into ME. I would wake up boiling hot and it feels like an...
    Post by: AliceLily, Apr 23, 2023 in forum: General and other signs and symptoms
  17. AliceLily
    Post

    New Zealand: Dysimmune Research - research organisation

    I've just emailed them and put my name forward.
    Post by: AliceLily, Mar 25, 2023 in forum: News from organisations
  18. AliceLily
    Post

    Covid-19 vaccination experiences

    It's been nearly 9 months since my last Covid booster. They are rolling out the next Covid vaccine the beginning of April here in NZ. I have an op...
    Post by: AliceLily, Mar 22, 2023 in forum: Epidemics (including Covid-19, not Long Covid)
  19. AliceLily
    Post

    What are the best coronavirus masks?

    I'm still wearing a mask when I go out. I do everything possible not to catch Covid. Whenever I touch anything when out I sanitize my hands, even...
    Post by: AliceLily, Mar 7, 2023 in forum: Epidemics (including Covid-19, not Long Covid)
  20. AliceLily
    Post

    Protocol Faecal microbiota transplantation (FMT) in Norwegian outpatients with mild to severe ME/CFS: protocol (...), 2024, Skjevling et al. Comeback Study

    I think the gut and other areas of microbiome problems have been caused by an immune reaction and it has seized the microbiota changing it...
    Post by: AliceLily, Mar 3, 2023 in forum: ME/CFS research
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