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  1. Jaybee00
    Post

    Donating and fundraising by people with ME/CFS - discussion thread

    I think there are 2 issues—not directly addressing OP question. 1. Do small donations matter? A google search says yes. E.g....
    Post by: Jaybee00, Jan 8, 2025 in forum: Fundraising
  2. Jaybee00
    Thread

    Johnny Boufarhat—mystery illness

    TECH SAVVY ‘Mystery sickness’ left me laid up in bed & on my computer…now I’ve I turned my skill into £4.5BILLION tech firm He is now third in...
    Thread by: Jaybee00, Jan 7, 2025, 8 replies, in forum: Other health news and research
  3. Jaybee00
    Post

    Encephalitis lethargica - The forgotten epidemic

    Why wasn’t there any post-Covid EL? Why haven’t we heard of anyone being diagnosed with EL in the last twenty years or so?
    Post by: Jaybee00, Jan 7, 2025 in forum: Epidemics (including Covid-19, not Long Covid)
  4. Jaybee00
    Post

    Impacts of the 2024 change in US government on ME/CFS and Long Covid

    [MEDIA] Important read on Jay Bhattacharya's NIH nomination and why it's very bad. (And if you think the author is a "leftist," you are so...
    Post by: Jaybee00, Jan 5, 2025 in forum: Other health news and research
  5. Jaybee00
    Post

    USA: Mount Sinai PACS clinic and Dr David Putrino

    Spitting into the wind…
    Post by: Jaybee00, Jan 4, 2025 in forum: USA clinics and doctors
  6. Jaybee00
    Post

    Open Pilot study in Norway - Daratumumab in ME/CFS

    Does anyone know how to score the DSQ SF test? https://www.leonardjason.com/wp-content/uploads/2021/05/DSQ-SF.pdf ETA: guessing that you add...
    Post by: Jaybee00, Jan 3, 2025 in forum: Recruitment into current ME/CFS research studies
  7. Jaybee00
    Post

    Norketotifen

    Ugh. It’s an antihistamine.
    Post by: Jaybee00, Jan 1, 2025 in forum: Drug and supplement treatments
  8. Jaybee00
    Post

    Upadacitinib (rinvoq)--could it reduce fatigue in ME/CFS?

    Observation, NOT a judgement. With respect to the HR remission account, if the patient was so severe, and frequently couldn’t eat, speak or...
    Post by: Jaybee00, Dec 31, 2024 in forum: Drug and supplement treatments
  9. Jaybee00
    Post

    [Case Report] Treatment of Long Covid with Enoxaparin, 2025, Wright, Kell, Pretorius, Putrino

    “Informed consent was obtained from the patient to publish this case report.”
    Post by: Jaybee00, Dec 31, 2024 in forum: Long Covid research
  10. Jaybee00
    Post

    Open Pilot study in Norway - Daratumumab in ME/CFS

    Seems like there are more adverse reactions with IV than subQ...
    Post by: Jaybee00, Dec 29, 2024 in forum: Recruitment into current ME/CFS research studies
  11. Jaybee00
    Post

    Doxepin is more effective than zolpidem in improving executive function in patients with insomnia disorder, 2023, Zhenghe Yu et al

    6mg doxepin would wipe me out. Try a lower dose initially.
    Post by: Jaybee00, Dec 29, 2024 in forum: Sleep Disturbance
  12. Jaybee00
    Post

    Open Pilot study in Norway - Daratumumab in ME/CFS

    @Jonathan Edwards or anyone else. Do we know why 4 injections are needed? And why the 2 week interval? Since Dara is really expensive, if...
    Post by: Jaybee00, Dec 29, 2024 in forum: Recruitment into current ME/CFS research studies
  13. Jaybee00
    Post

    Open Pilot study in Norway - Daratumumab in ME/CFS

    Yes. Ingrid is not in the same group as Jonas. Ingrid did her Ph.D. in Bergen with Fluge’s group. The only knock on Ingrid is that she doesn’t...
    Post by: Jaybee00, Dec 29, 2024 in forum: Recruitment into current ME/CFS research studies
  14. Jaybee00
    Post

    Should we change our name: 'ME/CFS Skeptic'?

    I think you should change it. ME/CFS [research] update(s) ME/CFS research highlights or digest, abstracts
    Post by: Jaybee00, Dec 27, 2024 in forum: General ME/CFS news
  15. Jaybee00
    Post

    Open Pilot study in Norway - Daratumumab in ME/CFS

    I thought high IGG meant a more severe disease state, therefore harder to treat?
    Post by: Jaybee00, Dec 23, 2024 in forum: Recruitment into current ME/CFS research studies
  16. Jaybee00
    Post

    Open Pilot study in Norway - Daratumumab in ME/CFS

    @Jonathan Edwards Do these data potentially change your mind about Daratumumab being a viable treatment for MECFS? Also why is it that people...
    Post by: Jaybee00, Dec 23, 2024 in forum: Recruitment into current ME/CFS research studies
  17. Jaybee00
    Post

    Open Pilot study in Norway - Daratumumab in ME/CFS

    Subcutaneous dara is dara plus hyaluronidase-FIHJ. Does anyone what FIHJ stands for? Thanks.
    Post by: Jaybee00, Dec 23, 2024 in forum: Recruitment into current ME/CFS research studies
  18. Jaybee00
    Post

    Open Pilot study in Norway - Daratumumab in ME/CFS

    [MEDIA] Some good news on the dara trial is released. They show 3 patients. They also show steps, which I like a lot more than the SPF PF score....
    Post by: Jaybee00, Dec 22, 2024 in forum: Recruitment into current ME/CFS research studies
  19. Jaybee00
    Post

    Aripiprazole as protector against COVID-19 mortality Munecas et al 2024

    I’m sorry that you feel that you’ve been harmed by high dose Abilify. However many thousands of ME/CFS patients have benefited, some very...
    Post by: Jaybee00, Dec 21, 2024 in forum: Epidemics (including Covid-19, not Long Covid)
  20. Jaybee00
    Post

    Best US Charities to Donate to?

    But this is more of advocacy rather than research, which is fine, if that’s the goal of your contribution. I gave to Solve at one point but got...
    Post by: Jaybee00, Dec 20, 2024 in forum: Fundraising
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