• Welcome to Phoenix Rising!

    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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Search results

  1. M

    Illness progression in chronic fatigue syndrome: a shifting immune baseline

    They claim 90% correct prediction rate. All their normalized data is attached in a spreadsheet, so anyone who want to can reanalyze the data. Thats the right spirit! Do you hear me PACE authors?
  2. M

    Australian scientists make breakthrough in Chronic Fatigue Syndrome testing

    This looks promising ... https://patentscope.wipo.int/search/en/detail.jsf;jsessionid=6F15F768067BD0950EAE43A17D9771A6.wapp1nC?docId=WO2016023077&recNum=1&maxRec=&office=&prevFilter=&sortOption=&queryString=&tab=PCTDescription Go to [00445] and look at Table 5
  3. M

    Dr James Coyne tackles the PACE follow-up paper

    It seems more academic sharks have sensed the smell of blood
  4. M

    Maintenance of Chronic Fatigue Syndrome (CFS) in Young CFS Patients Is Associated with the 5-HTTLPR

    Yes they insist on using what they call "a broad case definition":
  5. M

    Maintenance of Chronic Fatigue Syndrome (CFS) in Young CFS Patients Is Associated with the 5-HTTLPR

    For those who think all is just well in Norway, think again. Certain people will always find (invent) a BPS explanation no matter what the findings are. Here they have a genetic variation correlating to CFS prognosis. As the the faithful members of the "church of BPS" they are, they couple...
  6. M

    What research would you do if you had £1M?

    I'd go for a phase 3 trial of cyclo in mild to severe ME (ICC) and start recruiting participating centers. As soon as the results from the norwegian phase 2 trial are ready next spring I would try to treat as many as possible. Never mind the exact disease mechanism if we can get a treatment...
  7. M

    Fasting triggers stem cell regeneration of damaged, old immune system

    There's a similar documentary from BBC called "Eat, Fast and Live Longer". I remember watching it a couple of years ago.
  8. M

    What Rituximab dosing schedule does OMI use?

    @deleder2k, rumors has it there was actually a few people getting RTX privately here in Norway in May (http://www.meforum.info/viewtopic.php?f=72&t=16596, in Norwegian). Don't ask me how they got approval for that. I've heard rumors later that Fluge & Mella asked them not to treat more people...
  9. M

    Rituximab in Australia

    Hi, The current Norwegian Rituximab trial is a phase 3 trial, with "gold standard" scientific design (randomized, placebo-controlled, double blinded). The unblinding will happen mid-2017. Any official (journal) publication will probably happen in 2018. Another trial that should be of interest...
  10. M

    A New Potential Cause for Alzheimer’s: Arginine Deprivation (relevance for ME/CFS?)

    I've been reading a bit more about arginase inhibition. Seems the most effective easily available supplements are BCAA (branched chain amino acids), norvaline, and citrulline, based on lab tests.
  11. M

    Fasting triggers stem cell regeneration of damaged, old immune system

    I have read about a Norwegian girl who was cured from her ME by following the 5:2 diet. This might explain why she got better
  12. M

    A New Potential Cause for Alzheimer’s: Arginine Deprivation (relevance for ME/CFS?)

    l-norvaline should be an option for arginase inhibition. It's even available from amazon as a supplement. Here's links to a few relevant publications: Arginase inhibitor in the pharmacological correction of endothelial dysfunction Arginase II inhibition prevents nitrate tolerance (not using...
  13. M

    A New Potential Cause for Alzheimer’s: Arginine Deprivation (relevance for ME/CFS?)

    Yes that seems to be one possibility. I haven't had time to research the different options regarding arginase inhibition. DFMO was the drug used in the mouse study I referred to above, but there is surely other and maybe better options(?).
  14. M

    A New Potential Cause for Alzheimer’s: Arginine Deprivation (relevance for ME/CFS?)

    @Gingergrrl : A certain type of activated microglia produces too much arginase (not aginine). Arginase catalyses breakdown of arginine, leaving too little arginine for NOS to work properly. I'm sorry if the initial post was hard to understand. I guess I had too much I wanted to say (at once)...
  15. M

    A New Potential Cause for Alzheimer’s: Arginine Deprivation (relevance for ME/CFS?)

    Hello everyone. This will be my first post ever here at PR. I've been lurking here for a couple of months now after my teenage daughter got the diagnosis moderate to severe ME/CFS (ICC definition) five months ago. I came across this article yesterday that had me thinking a bit: A New Potential...