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  1. AliceLily

    Covid-19 vaccination experiences

    I had to stay one night in hospital Friday night. I tried to wear a mask while sleeping but I couldn't bear it while trying to go off to sleep so I took it off and hoped for the best. It's been 5 days now so I think I would have had symptoms by now if I had been exposed.
  2. AliceLily

    Covid-19 vaccination experiences

    I hope you all get through the coming winter well. I managed to not get a cold/flu or Covid during our NZ winter and I have been going out nearly every day catching a bus (short ride). I double masked up while out though. I also am not having visitors inside except for my brother and his family.
  3. AliceLily

    Evidence that M.E. isn’t contagious?

    I've haven't any medical experience but I think this is what has happened too. I think I have even had two different reactions after two different infections unfortunately. 1. The first when I was 20 years old. I was given a vaginal pessary after an infection and right from that first tablet...
  4. AliceLily

    Is PEM a crash? Is a crash PEM? Semantically distinct? Or distinct phenomena?

    Yes, I notice a difference at moderate ME now, my PEM is not as extreme so I understand what you are saying here. At very severe levels of ME you really get smacked up constantly with PEM, it really is a place you'd never want to experience. I couldn't bear to ever experience those years again...
  5. AliceLily

    Is PEM a crash? Is a crash PEM? Semantically distinct? Or distinct phenomena?

    I'd be really interested to hear other MEs experience of very severe ME and if they can distinguish between a crash and PEM. I just can't seem to relate to a crash. For me it is PEM. PEM to me is more than crashing, at it's worse it is the most devastating and hellish place that is agonizing to...
  6. AliceLily

    Is PEM a crash? Is a crash PEM? Semantically distinct? Or distinct phenomena?

    That's amazing to me that you call a crash worse than PEM. For me PEM is the worst that ME can get. It wasn't until very severe ME that I really got to experience just how bad PEM could be. At very severe ME in I was in a rolling PEM with layers of PEM on top. So I really got to experience the...
  7. AliceLily

    Is PEM a crash? Is a crash PEM? Semantically distinct? Or distinct phenomena?

    Interesting question. I've never distinguished a difference, PEM has always been PEM to me and a crash to me is a different name for the same thing we call PEM. I have noticed different types of triggers for PEM though, that are brought on by immediate, delayed and accumulated exertion...
  8. AliceLily

    Covid-19 vaccines and vaccinations

    Is this the longest we have gone without another severe new Covid variant? I think it has been over a year since omicron began. Edit: just realised I might be in the wrong thread!
  9. AliceLily

    Covid-19 vaccination experiences

    It's been a couple of days since my 4th dose Covid vaccine and nothing really to report. Just the usual sore arm . Out of all the doses so far this 4th dose had the least of symptoms and what I thought I felt were very very slight. I don't know if clumsiness is a symptom, I sure did have one of...
  10. AliceLily

    Covid-19 vaccination experiences

    @JemPD I'm in New Zealand. I'll link to a page that has information on second boosters for New Zealanders. Just scroll down to the 'Second Boosters' : Booster Doses and Second Booster Doses | The Immunisation Advisory Centre (immune.org.nz) I"m 58 years old and feel at risk with an underlying...
  11. AliceLily

    Covid-19 vaccination experiences

    It's been six months since my 1st Covid Pfizer booster shot so I decided to see if I could do a walk in at my local pharmacy today. No problems, managed get my 2nd booster (4th dose) vaccination straight away. Will update in the next few days. Edit: to add Pfizer and 4th dose.
  12. AliceLily

    Anyone else experienced a paralysis feeling at the top of the back of the legs

    @Milo @MeSci @Mij @Wonko @DokaGirl Thanks. After reading your experiences I think I must have been experiencing lactic acid build up. Most likely to have been that. I was trying to carry on a normal day in those earlier years, big mistake. Thanks again.
  13. AliceLily

    Anyone else experienced a paralysis feeling at the top of the back of the legs

    It only happened to me when walking up a hill. Also I only experienced this in my early years of ME (25 years ago) when I didn't know I had ME and I was still trying to hold down full time work. I never experienced it again after very severe ME. I am thinking that it may be that at very severe...
  14. AliceLily

    Would you agree that acceptance leads to being able to achieve more?

    In my severest years I couldn't find any acceptance, there was too much force imposed by the ME at extreme levels. It took many many years to improve to moderate level and that only happened by the ME forcing me to bed and rest. I now accept that I have to manage my illness to keep from...
  15. AliceLily

    A thread to talk about muscle biopsies

    God bless half the planet with a cervix! and bless the other half too. :angel:
  16. AliceLily

    A thread to talk about muscle biopsies

    I thought any kind of muscle tissue could be used/made use of for research no matter what part of the body. I wouldn't expect women to go through cervical biopsy for ME when there are other areas biopsies could be taken. You missed my point. I thought I had made it clear that I am going...
  17. AliceLily

    A thread to talk about muscle biopsies

    I had a scraping of cervix tissue a couple of years ago and will be undergoing another op in September for more extensive biopsy of cervix canal. I wish I could ask that these biopsies could go on to ME research afterwards. But might not be possible after first lab testing. Sure is hard to walk...
  18. AliceLily

    Why use Forget Me Not as a symbol for ME?

    I've never associated 'forget me nots' with death. I have always felt that it represented quite well how PwME can be so ill and hidden away in their bedrooms, homes and forgotten about. So, forget me nots are a reminder not to forget about PwME.
  19. AliceLily

    Meaning of the word 'malaise' and its use in the term Post-exertional malaise (PEM)

    You bring back memories of how it was for me in my early years of ME when I didn't know I had ME.
  20. AliceLily

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

    When I describe how terrible PEM can be at very severe and the higher end of severe I am not exaggerating. Thank you for acknowledging that you do believe what is expressed. It needs to be acknowledged and not invalidated. It might also help to remember the levels of ME. I am now at moderate...
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