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  1. J

    MEAction 2021 MECFS researchers video with R Davis,Prusty

    They seem vested in the IDO2 metabolic trap hypothesis, maybe a little too much in my view. I still haven't learned why they decided to pick that particular gene and mutation out of the tens of thousands of other genes. Even if they only consider genes that could create a bistable system and...
  2. J

    United Kingdom: ME Association news

    Well it's not even a hypothesis, it's mostly just a list of symptoms and listing of organs affected.
  3. J

    Let’s end the stigma of psychosomatic illness The Times (London) 22/04/2021

    Well, he is correct that functional illnesses, the way almost everything not known gets included in that group today, are certainly physical. He is also right that suffering from these, whatever trendy label you choose to give them, conditions are the next taboo, most doctors and people these...
  4. J

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

    I'm not sure how much it's going to help to know what the virus is. It will save some wasted time that researchers would have spent looking for other pathogens, but that's about it. EBV has been known for decades to cause postviral fatigue syndrome in a fraction of people who get ill with...
  5. J

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

    Seems unlikely to me that we would get pills, especially something you can take at home, anytime soon. When the outbreak started, I remember several doctors predicting we would have specific non-vaccine repurposed drugs available to treat COVID-19 before the vaccines would roll out. A year...
  6. J

    Functional autoantibodies against G-protein coupled receptors in patients with persistent post-COVID-19 symptoms, 2021, Wallukat et al

    I tested positive for 11 out of the 11 selected autoantibodies in the CellTrend test panel, which I believe is from the same people who wrote this article. I don't know what to make of it, but surely the likelihood of getting that result would be extremely low if we assume I represented the...
  7. J

    George Monbiot on ME/CFS, PACE, BPS and Long Covid

    It's very odd. I can't imagine any of these BPS guys coming out claiming depression is perpetuated by articles written about depression or by depression support groups. With regards to psychiatric conditions they seem perfectly content with stating more awareness is better and important. Since...
  8. J

    Guided graded exercise self-help for chronic fatigue syndrome: Long term follow up & cost-effectiveness following the GETSET trial, 2021, Clark et al

    It feels like the old guard is running out of ammunition. Relegated to publishing in their own journal and can't even bother to put a proper spin on their results as they used to. 10 years ago they would have found away around the sentence "most patients remained unwell at follow up". I think...
  9. J

    ME researcher Jonas Bergquist - interviews, talks

    I feel like it was a bit misparaphrased. Bergquist actually didn't give a timeline and pointed out the hypocrisy of giving the classic five year timeline as it's what doctors/researchers often think is far enough in the future so that nobody will remember in time. I actually do remember Ian...
  10. J

    Potential role of microbiome in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), 2020, Lupo

    Most likely consequence not cause. Improvements following FMT should be permanent if it was the cause, but people who have trialed FMT and improved typically report they need to repeat the procedure to maintain benefits. I also can see how having autonomic dysfunction, restricted diets, limited...
  11. J

    Preprint The true nature of an autoimmune disease, Leisk and Nocon 2021

    Just skimming through the list of observations from your clients, few of those fit myself. I don't have alopecia, no leukopenia, my leukocytes are elevated but just within reference range. No elevated liver enyzymes or any other abnormality that could be found on routine blood tests. I tested...
  12. J

    Aripiprazole - Abilify

    Since there is no standard dosage for Abilify in ME/CFS or any low-dose protocol for Abilify, frankly I don't think it makes much difference if a GP lets the patient "tweak" the dosage or if you go by the anecdotal evidence and use something like 0.5 mg. I have actually found I cannot tolerate...
  13. J

    Open Cervicocranial dysfunction, neuroinflammation and infection in ME/CFS compared to healthy subjects, Bragée & Bertilson [MEPRO study]

    I guess you pointed out the main risk and most damaging one, i.e. that they would turn into using behavioral therapies, either already, or later if they fail to find anything in their MRI studies. I don't have much knowledge of Swedish clinics, but I do remember the Gottfries clinic used to not...
  14. J

    Aripiprazole - Abilify

    This is a good point, I would agree something stimulating is not necessarily a bad thing if it helps to reduce brain for and increase physical activity. Coffee is a bit stimulating and I sometimes find it useful when I need to perform. The issue that often comes up with stimulating drugs is...
  15. J

    Open Cervicocranial dysfunction, neuroinflammation and infection in ME/CFS compared to healthy subjects, Bragée & Bertilson [MEPRO study]

    I think it's a good thing that they are doing biomedical studies in Sweden, especially since Denmark, Finland to some degree and also Norway with the Lightning Process meme are not progressing much at all on the biomedical front. I hope they don't become over-invested in the...
  16. J

    Aripiprazole - Abilify

    I think it depends a lot on how the trials were set up though. A retrospective study of LDN in ME/CFS (article) showed almost the same number (73.9%) of patients improving, but we know LDN is no miracle drug in ME/CFS despite lots of patients having trialed it. I think it's very much conceivable...
  17. J

    Aripiprazole - Abilify

    OMF/Stanford are planning a placebo-controlled trial on low-dose Abilify. And yeah, let's hope we can finally get some more RCT trials going on drugs for ME/CFS. Current lack of RCT evidence for ME/CFS treatments is depressing since the issue isn't just lack of evidence but that nothing has even...
  18. J

    Glycolytic impairment - what are the practical implications?

    I think there are people in both camps as well, I had problems keeping weight and building muscle all my life and still in my 30's the BMI is on the low side without much activity. I think it does possibly tie with certain hypotheses of ME/CFS, one being that ME/CFS is kind of a hypometabolic or...
  19. J

    Aripiprazole - Abilify

    We don't know the core issues of most chronic diseases, even common ones that have seen millions of dollars of research. Even in COVID-19, where we know the exact trigger, we are still clueless with how to treat chronically ill patients. I like the ambition of Ron Davis to try to get at the core...
  20. J

    Aripiprazole - Abilify

    Yeah, it is what it is, your description fits perfectly the situation in Finland and probably most European countries. Off-label treatment is supposed to be a thing, but it really isn't, apart from geriatrics and psychiatry, which have different rules(?). My 90 year old grandparent was given...
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