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  1. jaded
    Post

    Recurrent infections drive persistent bladder dysfunction and pain via sensory nerve sprouting and mast cell activity,2024, BYRON W. HAYES et al

    I find this fascinating. I have painful bladder syndrome and widespread body pain/constant migraines in addition to my ME and PoTS. I’ve often...
    Post by: jaded, Mar 2, 2024 in forum: Other health news and research
  2. jaded
    Post

    SCN9A variant and dysautonomia

    I’m awaiting my results for sodium channel mutations which has taken nearly 2 years to come back due to a paperwork mix up. I’m not sure how it...
    Post by: jaded, Dec 15, 2023 in forum: Laboratory and genetic testing, medical imaging
  3. jaded
    Post

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    I found this comment by Kaufman particularly depressing and offensive without evidence: “Then there’s the profoundly disabled, mostly bedbound,...
    Post by: jaded, Oct 29, 2023 in forum: ME/CFS research news
  4. jaded
    Post

    Does ME/CFS cause permanent damage? Discussion thread

    To me it doesn’t make sense how he thinks long covid if caught early on can be reversible yet ME/CFS can’t. They have no treatments yet for long...
    Post by: jaded, Sep 24, 2023 in forum: General ME/CFS discussion
  5. jaded
    Thread

    Does ME/CFS cause permanent damage? Discussion thread

    Posts moved from Long Covid in the media and social media I wanted to refer back to the article on page 6 of this thread that’s been on my mind...
    Thread by: jaded, Sep 24, 2023, 12 replies, in forum: General ME/CFS discussion
  6. jaded
    Post

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    A newly set up long covid children’s clinic at my neighbouring large teaching hospital trust....
    Post by: jaded, Dec 13, 2021 in forum: Long Covid news
  7. jaded
    Post

    Skewing of the B cell receptor repertoire in myalgic encephalomyelitis/chronic fatigue syndrome, 2021, Sato et al

    I have just come across a YouTube video published on the 8th November entitled: ‘ME/CFS and Long COVID: A Discussion between Dr. Avindra Nath and...
    Post by: jaded, Nov 9, 2021 in forum: ME/CFS research
  8. jaded
    Post

    Corneal confocal microscopy identifies corneal nerve fibre loss and increased dendritic cells in patients with long COVID, 2021, Bitirgen et al

    I’ve had burning eyes as my ME, FM and PoTS has gradually progressed over the years. Nobody has ever explained this to me. Although I’m aware that...
    Post by: jaded, Jul 30, 2021 in forum: Long Covid research
  9. jaded
    Post

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    Not a very nice read in the times entitled: Why is Britain now the capital of long covid? https://apple.news/A-Qike_HcTKSHanFINYe3Ig Apparently...
    Post by: jaded, Jun 12, 2021 in forum: Long Covid news
  10. jaded
    Post

    Patent: Method for the treatment of CFS using an inhibitory or cytotoxic agent against plasma cells, 2021, Fluge, Mella

    For completeness this is the Patient 1 case summary: Patient 1 : Patient 1 was a woman aged 37 years, who had ME/CFS for 22 years. She...
    Post by: jaded, Apr 25, 2021 in forum: ME/CFS research news
  11. jaded
    Thread

    Patent: Method for the treatment of CFS using an inhibitory or cytotoxic agent against plasma cells, 2021, Fluge, Mella

    I've just come across a patent from Fluge and Mella which looks like it was updated/published in March 2021 entitled 'Method for the treatment of...
    Thread by: jaded, Apr 24, 2021, 16 replies, in forum: ME/CFS research news
  12. jaded
    Post

    Covid-19 vaccination experiences

    I had exactly the same experience as you @Forbin from both doses of the Pfizer vaccine. Really bad muscle pain in the injected arm for several...
    Post by: jaded, Apr 21, 2021 in forum: Epidemics (including Covid-19, not Long Covid)
  13. jaded
    Post

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    I’ve just come across this series of videos on YouTube which looks like a group of NHS doctors who have come together and are offering private...
    Post by: jaded, Apr 21, 2021 in forum: Long Covid news
  14. jaded
    Post

    Insights from Invasive Cardiopulmonary Exercise Testing of Patients with ME/CFS, 2021, Joseph et al

    @Grigor - many thanks for contacting Dr Systrom and sharing his email with us. It kind of make sense now that he views the diseases and maybe the...
    Post by: jaded, Feb 21, 2021 in forum: ME/CFS research
  15. jaded
    Post

    Insights from Invasive Cardiopulmonary Exercise Testing of Patients with ME/CFS, 2021, Joseph et al

    What I don’t understand is in the table of baseline characteristics they say out of 160 ME/CFS patients, 31% had SFN, 33% had POTS and 22% had...
    Post by: jaded, Feb 21, 2021 in forum: ME/CFS research
  16. jaded
    Post

    Profile of circulating microRNAs in Myalgic Encephalomyelitis......(2020)Moreau et al

    I may be wrong here but an increase or decrease in mi-RNAs following a post exertional challenge may still be the cause of PEM. It probably takes...
    Post by: jaded, Nov 12, 2020 in forum: ME/CFS research
  17. jaded
    Post

    Profile of circulating microRNAs in Myalgic Encephalomyelitis......(2020)Moreau et al

    Found it: https://www.nature.com/articles/s41598-020-76438-y The full study title is Profile of circulating microRNAs in myalgic...
    Post by: jaded, Nov 12, 2020 in forum: ME/CFS research
  18. jaded
    Post

    Mapping of pathological change in chronic fatigue syndrome using the ratio of T1- and T2-weighted MRI scans. Thapaliya et al. 2020

    I'm not sure if this has any relevance to these findings but didn't Ian Lipkin mention about a problem with iron metabolism/uptake during his CDC...
    Post by: jaded, Aug 4, 2020 in forum: ME/CFS research
  19. jaded
    Post

    PEM and sweating?

    I sweat excessively and have hyperhidrosis that’s got worse as my ME has progressed. It’s triggered by sitting and standing up and cognitive or...
    Post by: jaded, Jul 31, 2020 in forum: Post-Exertional malaise and fatigue
  20. jaded
    Post

    Human Herpesvirus-6 Reactivation, Mitochondrial Fragmentation, and the Coordination of Antiviral and Metabolic Phenotypes in ME/CFS - 2020 - Schreiner

    @Forbin the patchy red rash all over my torso also happened to me twice. Once during my first ME onset aged 11 into mild ME then again preceding...
    Post by: jaded, Apr 25, 2020 in forum: ME/CFS research
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