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  1. R

    United Kingdom: ME Association governance issues

    Do you think we will see such a breakthrough in the next year? Or do we have to wait to see how the dara trials work out?
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    CSF immune cell alterations in women with neuropsychiatric Long COVID, 2025, Orlinick et al.

    Do you think we get these missing clues in the next year?
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    Who are currently the best ME/CFS researchers?

    Dr. Edwards wrote this a few weeks ago: So it may yet appear that the best researcher is not even currently on our radar?
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    Dysregulation of brain and choroid plexus cell types in severe COVID-19, Yang et al., 2021, Nature

    Abstract in second post https://abc7news.com/health/stanford-researchers-may-have-answer-to-treat-covid-brain-fog/10828320/ Working with a team in Germany, they found that the virus triggers brain inflammation, which leads to symptoms similar to Alzheimer's and Parkinson's. "Researchers at...
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    REAP: A platform to identify autoantibodies that target the human exoproteome, 2021, Wang et al

    Aaron Ring at Yale University is very interested in running some ME/CFS samples on the REAP platform. He asked if I knew of someone who could provide samples. I contacted Solve to see if they could help him. They failed to follow up with him. I then contacted Dr. Lipkin and asked if he could...
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    Digital ME conference in Stryn, Norway April 13-14th 2021

    I also liked this comment from Dr. Fluge: "They've written a paper on their hypothesis on what is the main mechanism behind ME which will soon be published." I'm looking forward to seeing their updated thoughts on the mechanism.
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    Judy Mikovits

    Thanks! I guess I should of kept reading.
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    Judy Mikovits

    I have one question if anyone wants to chime in. I know the XMRV story pretty well but my one question that always lingered was that Lo ? Alter at the NIH found sequences similiar to XMRV. Why were these findings ultimately discredited? Abstract XMRV or xenotropic murine leukemia...
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    Intravenous Cyclophosphamide in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. An Open-Label Phase II Study - 2020 - Rekeland, Mella, Fluge et al

    Looks like they have a possible biomarker for a subset: "A study with peptide arrays demonstrated an immunosignature based on serum antibodies that separated ME/CFS cases from healthy controls (18)" I wonder if there referring to this paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6505503/
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    Intravenous Cyclophosphamide in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. An Open-Label Phase II Study - 2020 - Rekeland, Mella, Fluge et al

    "This study shows that cyclophosphamide intervention is feasible for ME/CFS patients. The growing evidence for immune alterations in ME/CFS and the high symptom burden with very low quality of life, we believe can justify use of an immune modulating drug with possible side effects. The treatment...
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    Autoimmunity-Related Risk Variants in PTPN22 and CTLA4 Are Associated With ME/CFS With Infectious Onset (2020) Scheibenbogen et al.

    https://www.frontiersin.org/articles/10.3389/fimmu.2020.00578/full Excerpt: In conclusion, our study shows that the PTPN22 rs2476601 and CTLA4 rs3087243 autoimmunity risk variants are more frequent in patients with ITO ME/CFS. This finding provides further evidence that there is a genetic...
  12. R

    The biology of coronavirus COVID-19 - including research and treatments

    Posting in case anyone is interested: How does COVID-19 kill? Uncertainty is hampering doctors’ ability to choose treatments https://www.nature.com/articles/d41586-020-01056- Edited to a short quote for copyright reasons.
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    Trans-NIH ME/CFS Working Group Telebriefings 2020-2021 (next telebriefing March 30 2021)

    I had emailed Dr. Koroshetz earlier this year asking about grants from researchers outside the U.S. here is a snippet: It is possible for scientists from overseas to get “direct ” funding from NIH but the qualifications are: “ Whether the project presents special opportunities for furthering...
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    Dr Ron Davis - Updates on ME/CFS research - September 2019 onwards

    I'm down at the lab every few months donating blood. A few years ago when I was first involved it was deserted. When they bring you in and downstairs you really can't tell how many people are there working unless they bring you into the different departments. I look at the parking lot and at...
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    Coronavirus: Advice from ME organisations

    Article in the New England Journal of Medicine by Tony Fauci. On the basis of a case definition requiring a diagnosis of pneumonia, the currently reported case fatality rate is approximately 2%.4 In another article in the Journal, Guan et al.5 report mortality of 1.4% among 1099 patients with...
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    Robert Naviaux' Lab - News - from 2019 onwards

    Why don't you also ask OMF or the Ron Davis group why there not concerned about it not being published since they put up the million dollars to fund it. Maybe they can give you better insight? Just a thought.
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    Fundraiser for Dr. Prusty's research

    We each have to make our individual decisions on what projects we want to support. I personally have donated to Dr. Prusty's efforts.
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    Fundraiser for Dr. Prusty's research

    Solve had no problem supporting Dr. Prusty in the past. https://solvecfs.org/dr-bhupesh-prusty/
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    Fundraiser for Dr. Prusty's research

    Sorry I didn't clarify the 5 grants info is from Walter Koroshetz in an email exchange.
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    Fundraiser for Dr. Prusty's research

    The NIH only funds on average about five international grant applications a year. “ Whether the project presents special opportunities for furthering research programs through the use of unusual talent, resources, populations, or environmental conditions in other countries that are not readily...
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