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  1. LisaG
    Post

    ME Research UK announce funding for "The effect of activated HERVs and the associated immune response in severe ME/CFS"

    Not sure if this was posted before: HERV activation segregates ME/CFS from fibromyalgia and defines a novel nosological entity for patients...
    Post by: LisaG, Apr 12, 2024 in forum: ME/CFS research news
  2. LisaG
    Post

    hypermobility assessment tomorrow and craniocervical instability question

    Just back from the appointment and pretty exhausted, but I thought I'd share. It didn't start well as the consultant asked what could he do for...
    Post by: LisaG, Dec 7, 2023 in forum: General and other signs and symptoms
  3. LisaG
    Post

    hypermobility assessment tomorrow and craniocervical instability question

    Thanks, Kitty!
    Post by: LisaG, Dec 6, 2023 in forum: General and other signs and symptoms
  4. LisaG
    Post

    hypermobility assessment tomorrow and craniocervical instability question

    Thanks, Trish. I also hope the consultant is nice or at very least respectful. Though I have promised myself a huge cake if he isn't. Making it a...
    Post by: LisaG, Dec 6, 2023 in forum: General and other signs and symptoms
  5. LisaG
    Thread

    hypermobility assessment tomorrow and craniocervical instability question

    Having been housebound with ME/CFS for over twenty years, I was recently diagnosed with autism and I now have hypermobility assessment tomorrow! I...
    Thread by: LisaG, Dec 6, 2023, 5 replies, in forum: General and other signs and symptoms
  6. LisaG
    Post

    Petition: Make schools, CAMHs and other professionals recognise and accept Autistic Burnout

    I was just looking into autistic burnout, and came across this thread. I am waiting for an assessment for autism, and I've been housebound with ME...
    Post by: LisaG, Jan 14, 2023 in forum: Petitions
  7. LisaG
    Post

    Rapamune / Rapamycin/ mTOR

    Latest update on rapamycin/rapamune/sirolimus: I increased the dose but the lymph node pain and fatigue flared up badly afterwards. So, I am...
    Post by: LisaG, Jun 28, 2022 in forum: Drug and supplement treatments
  8. LisaG
    Post

    Rapamune / Rapamycin/ mTOR

    My experience with Rapamycin. I started a few weeks back and would just like to share progress. Background: I've been housebound with ME/CFS for...
    Post by: LisaG, Jun 23, 2022 in forum: Drug and supplement treatments
  9. LisaG
    Post

    Corticosteroids, hydrocortisone, prednisone for ME/CFS

    Just an update in case anyone has advice... As the months went by, the positive effect of the steroid treatment (kenalog/triamcinolone) waned and...
    Post by: LisaG, Apr 14, 2022 in forum: Drug and supplement treatments
  10. LisaG
    Post

    Corticosteroids, hydrocortisone, prednisone for ME/CFS

    A little update... I did try the prednisolone steroid. Very sorry that I did because it brought back some very old ME symptoms...crushing...
    Post by: LisaG, Oct 2, 2021 in forum: Drug and supplement treatments
  11. LisaG
    Post

    Compression Garment Reduces Orthostatic Tachycardia and Symptoms in Patients With [POTS], 2021, Bourne et al

    I wear them and they help to stop fluid pooling in my legs. I also sleep with my head raised - have done for years - as this helped POTS. I'd love...
    Post by: LisaG, Sep 21, 2021 in forum: 'Conditions related to ME/CFS' news and research
  12. LisaG
    Post

    Corticosteroids, hydrocortisone, prednisone for ME/CFS

    Interestingly I had the jab in April and still no lymph node pain. Would you expect such as lasting effect? I was rather hoping if I had a relapse...
    Post by: LisaG, Sep 19, 2021 in forum: Drug and supplement treatments
  13. LisaG
    Post

    Corticosteroids, hydrocortisone, prednisone for ME/CFS

    Thanks everyone. I've been given prednisolone for a skin condition but I'm wary to upset the new balance in my body, and it's good to know that...
    Post by: LisaG, Sep 19, 2021 in forum: Drug and supplement treatments
  14. LisaG
    Thread

    Corticosteroids, hydrocortisone, prednisone for ME/CFS

    Early in the summer I had a synthetic corticosteroid injection (Kenalog: Triamcinolone acetonide) for joint pain. To my surprise, I no longer...
    Thread by: LisaG, Sep 17, 2021, 19 replies, in forum: Drug and supplement treatments
  15. LisaG
    Post

    Cambridge University makes their texts free online until end of May 2020

    Hi I registered at Cambridge core but don't seem to have any access to books?? Any suggestions??
    Post by: LisaG, Apr 16, 2020 in forum: ME/CFS research news
  16. LisaG
    Post

    Cambridge University makes their texts free online until end of May 2020

    thanks for this. Will try to log in. Really helpful.
    Post by: LisaG, Mar 31, 2020 in forum: ME/CFS research news
  17. LisaG
    Post

    Low-dose naltrexone in the treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), 2019, Polo et al.

    I tried this recently. It did not work for me at all. I felt even more fatigued and flu-like, and spaced out (emotionally detached). Tried a...
    Post by: LisaG, Dec 17, 2019 in forum: ME/CFS research
  18. LisaG
    Post

    Help for sound sensitivity

    Thanks Diluted-biscuit. The flare snoozers are pricey. I guess because they come from Australia (I am in the UK). But will keep them in mind.
    Post by: LisaG, Aug 6, 2018 in forum: Home adaptations, mobility and personal care
  19. LisaG
    Post

    Help for sound sensitivity

    Just got my peltor optimum III ear defenders. They seem to be really effective but haven't worn them yet for long periods. They are HUGE! I was...
    Post by: LisaG, Jul 26, 2018 in forum: Home adaptations, mobility and personal care
  20. LisaG
    Post

    Help for sound sensitivity

    In case you come back to this thread - thanks for all who contributed here. I just moved house to a noisier neighbourhood and need some ear or...
    Post by: LisaG, Jul 24, 2018 in forum: Home adaptations, mobility and personal care
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