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  1. J

    Open‐label study with the monoamine stabilizer (‐)‐OSU6162 in myalgic encephalomyelitis/chronic fatigue syndrome, Haghighi et al, 2021

    OSU 6162 is a partial D2 agonist similar to Abilify. Probably something here. Would like to see a longer study to see if tolerance/tachyphlaxis develops. https://en.m.wikipedia.org/wiki/OSU-6162
  2. J

    A Molecular network approach reveals shared cellular and molecular signatures between CFS and other fatiguing illnesses, 2021, Comella et al

    I’m waiting for my @Simon M explainer....Didn’t know that Mt.Sinai had a group working on this.
  3. J

    Review article: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Where Will the Drugs Come From? 2021, Toogood et al

    We’re druggable! Also too early in the process for them to cover Abilify. First I’ve heard of Myelophil. https://www.frontiersin.org/articles/10.3389/fphar.2019.00991/full
  4. J

    Best ME charity to support on Amazon Smile?

    I support OMF—with many researchers and centers they are most likely to make a breakthrough.
  5. J

    Whitney Dafoe Updates

    Moved post Whitney not sleeping well due to Abilify.
  6. J

    Targeting CD38 with Daratumumab in Refractory Systemic Lupus Erythematosus, 2020, Ostendorf et al.

    Not cheap. https://www.fiercepharma.com/sales-and-marketing/j-j-undercuts-celgene-s-pomalyst-135k-per-year-darzalex-price
  7. J

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

    https://www.insideedition.com/drew-pinsky-among-covid-19-long-haulers-with-lingering-symptoms-i-am-forced-to-lie-down-every-hour Drew Pinsky Among COVID-19 ‘Long Haulers’ With Lingering Symptoms: ‘I Am Forced to Lie Down Every Hour or Two'
  8. J

    What if they find a biomarker?

    Might be reversible somewhat. A bunch of us got a lot of relief from Abilify—Martin (paused_me) went from severe bedbound to going to work. I don’t think you would get a similar response in MS from any of their meds. I agree with the discussion of PEM. I’m not really much an acute PEM person...
  9. J

    Open Medicine Foundation (OMF)

    I’ve mentioned this before but it would be helpful if OMF put out an official quarterly or biannual newsletter. Something short would be fine.
  10. J

    What if they find a biomarker?

    I have a feeling that OMF might be closing in on a biomarker. But if there is a biomarker and it reflects something downstream, is it possible that the biomarker might not be useful in identifying treatments? Are there examples of other diseases where a biomarker was found, but it was not...
  11. J

    Mechanism for drug tachyphylaxis (poop out) in ME/CFS?

    Some discussion here about which meds Jay Goldstein predicted would likely result in tolerance in patients. https://forums.phoenixrising.me/threads/abilify-stanford-clinic-patients.62807/page-33#post-2309930
  12. J

    Dental implants

    I am implanted and still alive!
  13. J

    Dental implants

    Anyone have dental implants post ME/CFS? Did they heal OK? Just wondering if they heal properly if you are not very active or if you are horizontal for long periods of time. Thanks.
  14. J

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

    Re NYT article. I don’t know why Maureen Hansen was so stand-offish. If you meet the criteria for MECFS, then you have MECFS. Also unfortunate that Amy P was cited—no evidence for her theories. Also unfortunate that neither Ron Davis nor Robert Phair was cited in the article.
  15. J

    Will COVID-19 Lead to ME/CFS?, Komaroff and Bateman, 2021

    Better title would have been: COVID-19 Will Lead to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
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