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  1. J

    Closed 2022 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 patients could get away with 3 injections (and get enough cd38 depletion), it would really be a cost saver.
  2. J

    Closed 2022 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 respond to emails even from Norwegians.
  3. J

    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
  4. J

    Closed 2022 Pilot study in Norway - Daratumumab in ME/CFS

    I thought high IGG meant a more severe disease state, therefore harder to treat?
  5. J

    Closed 2022 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 with lower initial IGG respond better to both dara and cyclo? I thought that high IGG potentially indicated autoimmune diseases involvement. So...
  6. J

    Closed 2022 Pilot study in Norway - Daratumumab in ME/CFS

    Subcutaneous dara is dara plus hyaluronidase-FIHJ. Does anyone what FIHJ stands for? Thanks.
  7. J

    Closed 2022 Pilot study in Norway - Daratumumab in ME/CFS

    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. The two responders had lower initial IGG levels, just like the cyclo trial. @Jonathan Edwards How come the dara didn’t lower IGG much in patient 2?
  8. J

    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 substantially, from low dose Abilify.
  9. J

    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 the heebee-jeebees based on their funding of questionable research.
  10. J

    On how to test more drugs, 2024, Teslo & Chertman

    Haven’t read yet… https://www.writingruxandrabio.com/p/on-clinical-trial-abundance
  11. J

    Best US Charities to Donate to?

    I remember getting a little heartburn about one of the things Solve funded, but I don’t remember what it was. Don’t necessarily agree that OMF is closed off—at their non-public research meeting they tend to invite a variety of researchers but I was surprised that the Norwegian group wasn’t at...
  12. J

    Best US Charities to Donate to?

    This year I gave all my donation to OMF. Another option is Simmaron https://www.simmaronresearch.com/
  13. J

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

    https://thedispatch.com/article/mainstreaming-junk-science/ Mainstreaming Junk Science Robert F. Kennedy’s views on health may have more popular support than we think.
  14. J

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

    Merged He Built a Wellness Empire While Adventuring With Robert F. Kennedy Jr. Dr. Mark Hyman, a “functional medicine” proponent and longtime friend of Robert F. Kennedy Jr., is finding powerful allies in his bid to treat disease with blood tests and supplements. Ugh! By his mid-30s, after...
  15. J

    Vertex's painkiller results match placebo in study, shares tumble

    Vertex Pharmaceuticals (VRTX.O), opens new tab said on Thursday its experimental non-opioid drug met the main goal of a mid-stage study but showed little difference versus a placebo in reducing pain, sending its shares down nearly 14% premarket...
  16. J

    Dr Ron Davis - Updates on ME/CFS research - September 2019 onwards

    Here is a link to a video about Ron Davis and Rob Phair’s recent work on the itaconate shunt with the scientists at the University of Utah. This was a talk we gave at the Bay Area MECFS support group which was recorded over Zoom.
  17. J

    Do you believe that “viral persistence” is the cause of ongoing MECFS and LC?

    Long COVID appears to be driven by ‘long infection’. Is that what the science says? https://marcveldhoen.substack.com/p/long-covid-appears-to-be-driven-by
  18. J

    Bio BS is worse than BPS--change my mind/prove me wrong

    Don’t disagree with this. But the issue (maybe my issue) is that there is basically zero support for BPS stuff from the ME/CFS “community”. By contrast there appears to be significant support for the current cohort of Long Covid researchers despite the fact for the most part, most/many of them...
  19. J

    Charity “Donation Matching”

    1 sometimes donors want to be anonymous. 2,3 ? 4 Yes! OMF has triple match through today, and I am donating.
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