Search results

  1. AliceLily

    Recliner chairs

    @oldtimer thanks for trying your chair out. Interesting to hear how it feels for you. I'll take my camera with me when I go and if I find a recliner that feel good I'll post pic of it. I'm not going to hurry to find one, so will look at as many as I can.
  2. AliceLily

    Recliner chairs

    @WillowJ I'll look out for some wedges as well. I love the bed I bought a year ago. We don't get to lie in them for long when choosing a new bed, so I'm glad the one I did choose has turned out well.
  3. AliceLily

    Recliner chairs

    @Dechi Thanks, I did wonder if Lazy Boy was a brand name. Yes, I can't afford to buy an expensive one so will be looking for the best at the lowest cost possible. There is one furniture shop that has quite a variety of recliners from looking at their web page and one bus trip away. I'd love to...
  4. AliceLily

    Recliner chairs

    @Dechi @WillowJ @oldtimer @ProudActivist @Trish @Nellie @Wonko @Annaiom @Adrian Thanks for your replies. Lots of good stuff there.
  5. AliceLily

    Recliner chairs

    I'm thinking of getting one for sleeping in for when I get a cold or for when my COPD flares up. Does anyone else sleep in them? Are they comfortable enough? I usually pile up pillows in bed when I need to sleep upright, never that comfortable really, but when you have to you have to. Are...
  6. AliceLily

    David Tuller crowdfund: Trial By Error: Reporting on ME/CFS and Related Controversies

    Donated. Will donate a second time in 2 weeks. Thanks.
  7. AliceLily

    David Tuller crowdfund: Trial By Error: Reporting on ME/CFS and Related Controversies

    @Wonko Thanks, I deleted my post above before you posted. I had asked whether I would be charged more for my NZ dollars donated. I tried to donate just a while ago and it wouldn't go through. I think it is because I haven't activated this particular bank card which was renewed last October. I...
  8. AliceLily

    Orthostatic intolerance

    For me, looking back, the OI started 2 days before my cold-like flu ME onset. It was so bad, like nothing I had experienced before in my life. I had to leave a class where I was studying part time and see the closest doctor in town (not my own doctor). It was a bizarre consultation considering...
  9. AliceLily

    Orthostatic intolerance

    @Mij Yes, I constantly rub my hand over my forehead when it gets to this point. It is the body in distress. When Dr Klimas came out to NZ years ago I went along to listen. I couldn't sit any longer than a half hour. I was rubbing my forehead about 20 minutes in and could no longer concentrate...
  10. AliceLily

    B-Lymphocyte Depletion in Patients With ME/cfs: A Randomized, Double-Blind, Placebo-Controlled Trial (2019) Fluge et al

    I can't remember, did we ever send a thank you card to Fluge and Mella?
  11. AliceLily

    Orthostatic intolerance

    Standing is the worst for me as well. Coming to a stop after walking was difficult when I had severe ME. It felt like my body was still in motion after I had stopped. So internally it felt like I hadn't stopped walking when I had. I just remembered that I used to shuffle into a full stop to...
  12. AliceLily

    Orthostatic intolerance

    I don't think my POTS/OI is even recorded in my GP notes and I have suffered severely with it. The reason for it not being recorded is that I didn't know what it was. It was just another awful symptom of my ME. This is why we need a speciality for ME and doctors who understand this part of our...
  13. AliceLily

    Who to contact to get an FMT clinical trial with high quality donors? Poor donor quality is likely what's keeping this from being an available cure

    It's so good to have researchers looking into the microbiome and I hope continue to look. I had a major sudden change in microbiome composition (vaginally, sorry everyone, TMI !)and I think this dysregulation made me vulnerable to getting ME and OI years later via a flu. I don't think the fix...
  14. AliceLily

    Minister targets anti-vaccination websites - BBC March 2019

    I do think there needs to be more research into the safety of vaccines, which may help to make them even more safer.
  15. AliceLily

    Minister targets anti-vaccination websites - BBC March 2019

    I agree. Really important children have all vaccinations. It saves lives. And leniency for those children who have illnesses that might not cope with vaccination. A lot of us might not be alive today if it weren't for the childhood vaccinations.
  16. AliceLily

    Data/info request from Robert Phair for Relapse/Remit people

    Yes, that is me too. So much going on in this illness.
  17. AliceLily

    Data/info request from Robert Phair for Relapse/Remit people

    Does relapse/remit mean free of all symptoms and able to function normally at healthy level? If so, I have not experienced that. I am never free of ME. I may have days where I can feel near normal but it really isn't normal because I get PEM and I am resting all afternoon and evening to keep...
  18. AliceLily

    David Tuller crowdfund: Trial By Error: Reporting on ME/CFS and Related Controversies

    I will be donating in 2 weeks time and might be able to donate again 2 weeks after this.
  19. AliceLily

    How is your motor control?

    @Wonko I am staring to likle this uncorrected typingm, i might jsut kep it dor this thread :woot: @Alvin Lol, I'll never forget going out with a friend who also has ME. Her and I were a lot sicker than we are now. One particular day we both needed to get out for our own sanity but we were...
  20. AliceLily

    How is your motor control?

    To this day I still cannot write my full signature. It's shortened by half. I cannot keep the flow going. It began at my mild ME onset. I was still working and I noticed the change when writing my signature on my timesheet. I have to miss out about 4 letters of my last name. This was one of the...
Back
Top Bottom