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  1. belbyr
    Post

    2023 Washington Post article: 'For Long Covid fatigue, a strategy called 'pacing' helps, but at a cost

    Is this the article that Whitney Dafoe had a statement in? I can't see the article.
    Post by: belbyr, Jan 19, 2023 in forum: Advocacy Projects and Campaigns
  2. belbyr
    Post

    (CDC) Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), 2023

    I see it as a step in the right direction for the CDC, they know they are losing the argument for more exercise. I'm assuming somewhere in the...
    Post by: belbyr, Jan 18, 2023 in forum: ME/CFS research
  3. belbyr
    Post

    Clinical experience with the α2A-adrenoceptor agonist, guanfacine, and N-acetylcysteine for...cognitive deficits in Long-COVID, 2022, Fesharaki-Zadeh

    I know it’s just one person but she’s a believer. She said she started noticing improvement around day 3
    Post by: belbyr, Jan 17, 2023 in forum: Long Covid research
  4. belbyr
    Post

    Clinical experience with the α2A-adrenoceptor agonist, guanfacine, and N-acetylcysteine for...cognitive deficits in Long-COVID, 2022, Fesharaki-Zadeh

    I see this is also used by Vanderbilt's autonomic clinic for 'hyperadrenergic pots' which is what I was initially diagnosed as having and after...
    Post by: belbyr, Jan 17, 2023 in forum: Long Covid research
  5. belbyr
    Thread

    Elevated TNF-a and NK?

    I was going back through test results before a hematologist appointment and was wondering if these had any clinical significance? [IMG] [IMG]
    Thread by: belbyr, Jan 16, 2023, 4 replies, in forum: Immunological
  6. belbyr
    Post

    Temelimab

    So is this something similar to rituximab that can supposedly help a portion of Covid/CFS patients? I can't get an English translation
    Post by: belbyr, Jan 15, 2023 in forum: Drug and supplement treatments
  7. belbyr
    Post

    Spoon theory

    I see it referred to all the time in other groups discussing POTS, EDS, Lyme, etc. The more I feel like we are all in the same :emoji_rowboat:
    Post by: belbyr, Jan 15, 2023 in forum: Monitoring and pacing
  8. belbyr
    Post

    Nebivolol: an effective option against long-lasting dyspnoea following COVID-19 pneumonia - a pivotal double-blind, cross-over controlled study, 2022

    Does/could this apply at all to ME/CFS and/or POTS at all?
    Post by: belbyr, Jan 15, 2023 in forum: Long Covid research
  9. belbyr
    Post

    Long COVID: major findings, mechanisms and recommendations, 2023, Davis, Topol et al

    This should at least help fight all the 'pace pushers' and 'CBT'ers' that there is physical evidence of things gone awry.
    Post by: belbyr, Jan 14, 2023 in forum: Long Covid research
  10. belbyr
    Post

    USA - Mayo clinic

    When I was at Mayo in 2015, they gave me a packet explaining how I need to hydrate and exercise for pots and cfs. The gastro doctor I saw there...
    Post by: belbyr, Jan 13, 2023 in forum: USA clinics and doctors
  11. belbyr
    Post

    Muscle atrophy

    I think there was a study recently done in Dr Sytrom's group that found muscle biopsy abnormalities in 10 of 11 patients. From Cort:...
    Post by: belbyr, Jan 12, 2023 in forum: General and other signs and symptoms
  12. belbyr
    Post

    Converging Evidence of Similar Symptomatology of ME/CFS and PASC Indicating Multisystemic Dyshomeostasis , 2023, Marks

    I saw her as a patient around the time that she was giving speeches on the 'system reset' with the modeling engineer. I don't really know...
    Post by: belbyr, Jan 12, 2023 in forum: ME/CFS research
  13. belbyr
    Post

    New Video: Chronic Fatigue Syndrome is a terrible name

    I wished CFS name would go away. I think just the name has really hurt. The disease should be named after someone like other diseases are, to make...
    Post by: belbyr, Jan 11, 2023 in forum: General Advocacy Discussions
  14. belbyr
    Post

    Evaluation of a Gene–Environment Interaction of PON1 and Low-Level Nerve Agent Exposure with Gulf War Illness..., 2022, Haley et al

    Merged thread https://scitechdaily.com/after-30-years-genetic-study-confirms-sarin-nerve-gas-as-cause-of-gulf-war-illness/ The researchers...
    Post by: belbyr, Dec 30, 2022 in forum: 'Conditions related to ME/CFS' news and research
  15. belbyr
    Post

    Persistent post–COVID-19 smell loss is associated with immune cell infiltration and altered gene expression in olfactory epithelium, 2022, Finlay JB

    Merged thread Duke:Nose biopsies show ongoing inflammation [MEDIA]
    Post by: belbyr, Dec 23, 2022 in forum: Long Covid research
  16. belbyr
    Post

    Current trial - First-of-Its-Kind Trial to Test Intravenous Therapy for Post-COVID-19 POTS, 2022, Johns Hopkins

    https://www.hopkinsmedicine.org/news/articles/on-the-heels-of-covid-19-influx-of-patients-with-pots-symptoms
    Post by: belbyr, Dec 19, 2022 in forum: Long Covid news
  17. belbyr
    Thread

    Current trial - First-of-Its-Kind Trial to Test Intravenous Therapy for Post-COVID-19 POTS, 2022, Johns Hopkins

    https://www.hopkinsmedicine.org/news/articles/first-of-its-kind-trial-to-test-intravenous-therapy-for-post-covid-19-pots It appears they are...
    Thread by: belbyr, Dec 19, 2022, 1 replies, in forum: Long Covid news
  18. belbyr
    Post

    Tissue specific signature of HHV-6 infection in ME/CFS, 2022, Prusty et al

    Dumb question but what can be done to bring the infections back down to a normal level? 'If' re-emerged HHV6 and/or EBV are making us symptomatic...
    Post by: belbyr, Dec 17, 2022 in forum: ME/CFS research
  19. belbyr
    Post

    Advancing Myalgic Encephalomyelitis Research to Transform Healthcare | Dr. Alain Moreau, PhD

    Just watched this and thought it was very eye opening! Between this and genetic risk factors presentation from PrecisionLife, could we have our...
    Post by: belbyr, Dec 16, 2022 in forum: Resources
  20. belbyr
    Post

    Genetic Risk Factors for ME/CFS Identified using Combinatorial Analysis, 2022, Das et al

    dutasteride, interesting...
    Post by: belbyr, Dec 15, 2022 in forum: ME/CFS research
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