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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. paolo

    Discussion about Armin labs (Split Thread).

    My guess here is that the use of antibiotics leads to disruption in gut flora, with a release of bacterial fragments in the circulation, which in turn induces a temporary T cell activation against bacterial antigens. This is what is then detected by the LTT.
  2. paolo

    Simon McGrath blogs: Mark Davis finds the strongest evidence yet for ME/CFS immune activation..

    The second step (TCR clustering) and third step (epitopes finding) of what I have named the universal immune test, are based on a technology (a combination of bioinformatics and some laboratory techniques) that are available only at Stanford, at present, as far as I know. So, there should be a...
  3. paolo

    Simon McGrath blogs: Mark Davis finds the strongest evidence yet for ME/CFS immune activation..

    This is my own blog post on Davis' talk: https://paolomaccallini.wordpress.com/2018/01/16/mark-davis-and-the-search-for-the-universal-immune-test/
  4. paolo

    Making Sense of Mark Davis' findings

    I have written the following blog post about Davis' talk: https://paolomaccallini.wordpress.com/2018/01/16/mark-davis-and-the-search-for-the-universal-immune-test/
  5. paolo

    Nimodipine (Nomitop) - has anyone tried it ?

    Are you still improving?
  6. paolo

    Nimodipine (Nomitop) - has anyone tried it ?

    According to this press article, researchers from Griffith University are considering nifedipine (which is a drug close to nimodipine) as a possible treatment for the calcium channel disfunction they found about an year ago (Nguyen T et al. 2016).
  7. paolo

    My Beta-Hydroxybutyrate experiment: increased activity tolerance and reduced PEM

    I have been taking 10 g of BHB at breakfast for 6 days. I feel some improvements, but I am not sure. We'll see. @enduin Any update with your own experience?
  8. paolo

    My Beta-Hydroxybutyrate experiment: increased activity tolerance and reduced PEM

    If you do the math, a dose of 10 g of BHB gives about one kg of ATP. But a human being consumes about 70 kg of ATP per day. I am not sure, but the amount of energy from a dose of 10 g of BHB seems pretty small.
  9. paolo

    Exogenous Ketones

    I searched for posts on this topic but I missed this one. Thank you!
  10. paolo

    Exogenous Ketones

    No, you have just to eat them, with no changes in your diet. This is the idea. A ketogenic diet induces the production of ketones by the liver, but you can also eat them. You can read this study on the use of ketones as a supplement.
  11. paolo

    Exogenous Ketones

    Has any of you ever tried exogenous ketones as a supplement? I have found low level of ketones (both acetoacetate and 3-hydroxybutyrate) in urines from three patients (I am one of them). If cells (including brain cells) can't burn glucose properly (as the last study by Fluge & co. has...
  12. paolo

    Ron Davis, Ashley Haugen, Linda Tannenbaum and Raeka Aiyar at IiME #OMF

    I have found a photo of some members of the "RNA tie club" I mentioned above. From left to right: Francis Crick, Alexander Rich, Leslie E. Orgel, James Watson. I hope this is not off topic.
  13. paolo

    Ron Davis, Ashley Haugen, Linda Tannenbaum and Raeka Aiyar at IiME #OMF

    Fungi are the worst enemies of bacteria, since they often compete for the same food (even in human gut). Mitochondria were bacteria about 1.5 billion years ago. So, there might be a link here.
  14. paolo

    Ron Davis, Ashley Haugen, Linda Tannenbaum and Raeka Aiyar at IiME #OMF

    The tie with fungi on it remindes me of the "RNA tie club" founded by James Watson and Gamow back in the Fifties, that included a group of scientists involved in understanding the role of RNA in proteins building, if I am not wrong. They used to wear a tie with an helix on it. So this tie might...
  15. paolo

    Ron Davis, Ashley Haugen, Linda Tannenbaum and Raeka Aiyar at IiME #OMF

    Great picture! I recognize also some scientists who will not talk during the conference, as dr. Peterson and dr. Hanson (if I am not wrong).
  16. paolo

    Results: Comprehensive Stool Analysis + Organic Acids Test

    This metabolic profile seems quite interesting, even if it offers 'only' 76 metabolites. It offers a good look at Krebs cycle. How much does this metabolic test cost? Did you repeat this test?
  17. paolo

    Results: Comprehensive Stool Analysis + Organic Acids Test

    Interesting enough, in your glycolysis and Krebs cycle you have the same pattern that Whitney Dafoe has: both the glycolysis and the Krebs cycle are depressed. In the picture below you can see some metabolic values of Whitney that dr. Kogelnik shared during a conference in 2016. As you can see...
  18. paolo

    Low dose Naltrexone

    I am having some positive effect with a dose of 3 mg at bed time.
  19. paolo

    Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

    Thank you for your suggestion. I have tried with a lamp which simulates sunlight. It is a lamp used for seasonal affective disorder. And it didn't work. I have also speculated that my seasonal variation could be linked to seasonal variation in some species of fungi in the air (R), as I have IgGs...
  20. paolo

    Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

    In my own case, I have partial remissions between June and July (I live north of the equator), almost every year. I think that these temporary improvements might be linked to seasonal variations observed in the immune system (see this comment by Antony Komaroff or this study). I would be glad to...
  21. paolo

    Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

    Perhaps prof Ron Davis was thinking about the experiment by Naviaux with suramin on autistic children. Naviaux investigated the usefullness of a single dose of suramin in autism, as suramin is an anti-purinergic drug which might turn off the cell danger response which is belived by Naviaux to be...
  22. paolo

    Ozone Therapy Improves Hepatitis C Fatigue, and Reduces Viral Load. Could it Work for ME/CFS Too?

    It is worth noting that according to FDA :"Ozone is a toxic gas with no known useful medical application in specific, adjunctive, or preventive therapy. In order for ozone to be effective as a germicide, it must be present in a concentration far greater than that which can be safely tolerated by...
  23. paolo

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    @Hip I am sorry for your depression. Take care. Thank you for the update. Very kind, as always.
  24. paolo

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    Hi @Hip, any news from your one-man trial with DCA?
  25. paolo

    DCA Sodium Dichloroacetate

    Hi @Mya Symons, I was wondering if you could say anything more on your experiment with DCA. Thank you.
  26. paolo

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    Thank you @Snow Leopard. It is all very interesting.
  27. paolo

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    Yes, I know. Is not possible to perform the same test on peripheral blood mononuclear cells (PBMC)?
  28. paolo

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    I don't understand why Fluge and Mella did not test directly for the PDH acivity in PMBC of their patients. In the mouse study I mentioned above they tested for the PDH activity, for instance.
  29. paolo

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    More similar to impaired glycolysis than to PDH deficiency.
  30. paolo

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    Thank you @Hip for sharing your experience.