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  1. J

    New Sleep Poll

    This poll is an updated version of the one from 2018 Biphasic sleep is a subset of problematic sleep maintenance. Some people many wake for half an hour and fall right back to sleep. Others may stay awake for several hours before going back to sleep--this is more like bi-phasic sleep.
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    2 College Students Dreamed Up an A.L.S. Treatment. The Results Are In.

    https://www.nytimes.com/2020/09/02/health/als-icebucket-treatment.html?surface=home-discovery-vi-prg&fellback=false&req_id=641572005&algo=identity&imp_id=185390044&action=click&module=Science%20%20Technology&pgtype=Homepage MECFS needs its own ice bucket challenge....
  3. J

    Plasma proteomic profiling suggests an association between antigen driven clonal B cell expansion and ME/CFS, 2020, Lipkin et al

    Specifically, what types of kinase inhibitors do you think might benefit ME/CFS patients (to interrupt signaling)?
  4. J

    Aripiprazole - Abilify

    https://pubmed.ncbi.nlm.nih.gov/31104106/ In vitro effects of antipsychotics on mitochondrial respiration Maybe this fries your mitos like anti-virals...
  5. J

    Plasma proteomic profiling suggests an association between antigen driven clonal B cell expansion and ME/CFS, 2020, Lipkin et al

    I have an advisory role on the Columbia U ME/CFS center. They wanted to know if folks had any questions for their researchers on their study "Plasma proteomic profiling suggests an association between antigen driven clonal B cell expansion and ME/CFS, 2020, Lipkin et al" If you have any...
  6. J

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

    partially about “long Covid” aka ME/CFS
  7. J

    Opinion ‘But I Saw It on Facebook’: Hoaxes Are Making Doctors’ Jobs Harder

    https://www.nytimes.com/2020/08/28/opinion/coronavirus-misinformation-faceboook.html?action=click&module=Opinion&pgtype=Homepage One of the authors Spencer contracted Ebola.
  8. J

    A request to those involved in ME research to indicate their position on spinal surgery

    I've reached out via a Columbia U. liaison to Lipkin, Horning and Komaroff. Do I get a Cadbury Flake or the Fruit Pastilles? To reach Ron Davis and Ron Tompkins try contacting Chris Armstrong carmstrong@omf.ngo Somebody else do this. You get an old standby--Hershey bar with almonds.
  9. J

    Validation of the Severity of ME/CFS by Other Measures than History: Activity Bracelet, CPET, SF-36. van Campen et al, 2020

    Here is part of the abstract from the Rekeland (Fluge) cyclo study https://www.s4me.info/threads/intravenous-cyclophosphamide-in-myalgic-encephalomyelitis-chronic-fatigue-syndrome-an-open-label-phase-ii-study-2020-rekeland-mella-fluge-et-al.14925/ Results: The overall response rate by...
  10. J

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    Moderator note: This post and following posts have been moved from this thread: A request to those involved in ME research to indicate their position on spinal surgery I could follow up on these two and maybe Komaroff. But I think it needs to be addressed as to how several people got...
  11. J

    Cognitive behavioural therapy for adults with dissociative seizures (CODES): a ... multicentre, randomised controlled trial (2020) Goldstein, Chalder

    Whatever happened to this? Did Perez respond to the Tuller letter? @dave30th I sort of liked Perez’ admission that that he didn’t really care about what the data showed—very frank of him!
  12. J

    New MS Drug Approved — Ofatumumab is first self-administered, targeted B-cell treatment for relapsing MS

    List of drugs for MS https://www.nationalmssociety.org/Treating-MS/Medications
  13. J

    New MS Drug Approved — Ofatumumab is first self-administered, targeted B-cell treatment for relapsing MS

    Another drug for MS, still nothing for MECFS. https://www.medpagetoday.com/neurology/multiplesclerosis/88195
  14. J

    Aripiprazole - Abilify

    Low dose of aripiprazole advanced sleep rhythm and reduced nocturnal sleep time in the patients with delayed sleep phase syndrome: an open-labeled clinical observation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5965391/
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    FDA rejects Gilead's would-be blockbuster filgotinib over toxicity concerns

    Looks like it’s still under consideration for the EU. EMA Panel Backs Filgotinib (Jyseleca) for Rheumatoid Arthritis https://www.medscape.com/viewarticle/934782
  16. J

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

    Is this sentence as bad as I think it is? Hmmm maybe it is indistinguishable because IT IS MECFS. (from Komaroff article)
  17. J

    FDA rejects Gilead's would-be blockbuster filgotinib over toxicity concerns

    https://www.barrons.com/amp/articles/fda-rejects-potential-gilead-blockbusters-scrambling-drug-stocks-51597846377
  18. J

    FDA rejects Gilead's would-be blockbuster filgotinib over toxicity concerns

    https://www.fiercebiotech.com/biotech/fda-rejects-gilead-s-would-be-blockbuster-filgotinib-over-toxicity-concerns Testicular toxicity! Wow—This is the drug KDM was promoting, and planning to do trials with. See here...
  19. J

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

    https://en.wikipedia.org/wiki/Upadacitinib https://www.rinvoq.com/ Janus kinase inhibitor that is selective for the JAK1 subtype of this enzyme--for the treatment of RA @Jonathan Edwards Any chance that this might also work for ME/CFS? I ask because I am bombarded with TV commercials for...
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