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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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Search results

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    SBM: Kogelnik, Rituximab and CFS: Jumping the gun

    This post is simply the best. Thank you.
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    Ampligen On the Clock: Hemispherx's 'Complete Response' Means Ball is Now in FDA's Court Now

    This patent form just says that polyriboinosinate and polycytidilate were modified to YIELD Poly IC. So they didn't modify Poly IC to create a less toxic form. They modified other drugs to create Poly IC. So anytime you see a study coming out now that uses Poly IC, it's using Ampligen, plain and...
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    Ampligen On the Clock: Hemispherx's 'Complete Response' Means Ball is Now in FDA's Court Now

    If the medicine in question causes brain toxicity -- even while stimulating the immune system -- it's still a very flawed treatment. Look up Poly inosinic poly cytidilic acid on pubmed. Scientists now administer Ampligen to mice in order to test other medicines under the conditions of...
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    The Best Drug for ME/CFS? The Other Side of Klonopin: A Patient's Story and A Survey

    here here.
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    A Remarkable Recovery Story

    I'm in the same camp here. I can relate to the physical exhaustion forcing someone to lie down for five hours. But not once in the seven+ years I've had this, have I had the cognitive ability to learn something like guitar...But again, it sounds great for the person in question, and I too am...
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    ME/CFS B-Cell Study/Rituximab Implications

    the neuroinflammation up my spine and into my head, the lesions on my brain -- those are very clearly signs of autoimmunity, the way my body is always wired and i don't get colds, and when i finally do get colds i actually sleep -- all very much signs of autoimmunity. i'm happy about this paper...
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    Effective MS drug that wipes out white blood cells

    all these monoclonal antibody drugs (the drugs that end in the suffix "mab," rituximab among them) seem so promising, and yet you hear about only a little rituximab research for ME (and some of that still lacks funding) and absolutely no testing with other monoclonal antibodies for ME. It's...
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    Are any other doc using Cheneys BISON CSF?

    I'm bumping this. Is there any news on the bison CSFs?
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    Anyone have prostatitis and ME?

    clomifen is a female fertility drug that can stimulate the production of androgens in men. i also had terrible chronic prostatitis -- i'm pretty sure all males with ME do -- which has gotten better over the years with various ME treatments but still persists in lesser form to this day...
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    NT Factor

    when my neuroinflammation is particularly bad and there's a lot of excitotoxicity going on up there, and so my brain becomes hazy and unable to work, the NT Factor restrores cognitive function with its way of working on lipid membranes. so it's a good fix for that particular symptom. but...
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    Postulated Vasoactive Neuropeptide Autoimmunity in fatigue-related Conditions

    Can we bump this up and find out the latest on it? And has anyone tried forskolin because of this and if so, what were the results?
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    Tired and sleeping in dreams

    i get the double dream thing. it's exactly how i sleep when my sleep quality is terrible. i wake up more tired than when i first when to sleep. i have no idea how to get rid of this poor quality sleep. it's definitely due to neuroinflammation. but i need an ME treatment to deal with the...
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    Ampligen On the Clock: Hemispherx's 'Complete Response' Means Ball is Now in FDA's Court Now

    I don't think Ampligen is the answer. It's not if you believe that ME/CFS has an autoimmune component or that it causes neuroinflammation (and ME definitely does cause neuroinflammation). If you look up the drug under its brand name, none of this info will come to light, but if you go to pubmed...
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    In Memory of Rich Van Konynenburg.

    Rich was a good man -- anyone who would devote such time and resources to such a hard-hit and long-ignored population is worthy of the highest praise. When I was at one of my lowest points about a year ago, I emailed Rich about his protocol and he responded to all of my questions and seemed open...
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    new anti-inflammatory supplement/agent targeting cytokines, incl. post exertion

    It has been a few months now since anyone posted on this thread. Have any of you guys seen results from this?
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    Inflammation "Burning Head" symptom and Insomnia?

    I've had the exact same symptom Hi -- this is my first time posting on Phoenix Rising. I'm a 24-year-old male (nearly 25). I've had CFS since I was 18. The last seven years have seen me experience all the usual CFS symptoms, but the above -- the burning head and insomnia -- is the one that has...