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  1. J

    Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Crosby et al. 2021

    Dear @Hutan I honestly think you are being overly critical here...~50% reduction in fatigue and brain fog is pretty significant.... But this is your opinion...it is not mine. There are several patient reports of people going from severe/very severe (like bed bound in dark rooms) to moderate...
  2. J

    Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Crosby et al. 2021

    To clarify a bit, the Abilify itself causes weight gain—this is a side effect.
  3. J

    Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Crosby et al. 2021

    An alternative explanation is that aripiprazole is actually effective at treating the symptoms of MECFS. Authors don’t claim this a RCT study. Weight gain is a side effect of antipsychotics so actually surprised weight gain was rather low.
  4. J

    Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Crosby et al. 2021

    Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): a retrospective study of 101 patients treated with a low dose of Aripiprazole...
  5. 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
  6. 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.
  7. 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
  8. 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.
  9. J

    Whitney Dafoe Updates

    Moved post Whitney not sleeping well due to Abilify.
  10. 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
  11. 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'
  12. 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...
  13. 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.
  14. 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...
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