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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. Mtb1966

    Doctors in and around London, UK

    @PracticingAcceptance The jury is still out on the cause of the liver tests. I had a liver biopsy which revealed some granuloma. They have tested for sarcoidosis as that is a common cause of these but no evidence of it elsewhere. Probably just a consequence of an constant overactive-immune...
  2. Mtb1966

    Doctors in and around London, UK

    I saw Dr Bansal Sep'17 and he prescribed Acyclovir which I have been taking ever since via my GP. I think there has been some marginal benefit in managing my symptoms which did also worsen when I decided to stop taking it for a few days. I haven't noticed any side effects. Like...
  3. Mtb1966

    Are CASP8 variants the genetic basis of immune dysfunction in ME/CFS (Citizen Researcher)

    Hi Kday I ran my Ancestry DNA through your excellent tool and the first item it threw up was homozgous CASP8 rsid1045485 but not the other 2 variants you mention in your post. I am a complete novice on genetics so bear with me please. Caspace-8 deficiency seems to be linked to a form of...
  4. Mtb1966

    UK, Weds 18 Oct: Jen Brea & Omar on ITV news and in The Times with Unrest

    Glad to have Jennifer on our side, her determination shines through. A very clear, concise interview. Lets hope she opens the eyes of our MP's. A shout out to Omar and all the other supportive husbands/wifes/partners. I'd be lost without my wife Liz.
  5. Mtb1966

    Best doc in UK?

    I saw Dr Bansal a month ago following an initial appointment with a nurse at St Helier 3 months earlier, having had my initial referral 2 years ago turned down. He didn't run any further tests but based on my apparent chronic immune activation he prescribed 4 months of Aciclovir. He also asked...
  6. Mtb1966

    Blood test abnormalities

    Hi @Katyw I noticed some similarities between your results and mine. Like you I'm searching for answers but thought it might be useful to compare notes at least. My ALT was fine in tests 2013-2015 but became elevated (59) last summer and subsequently rose to 73. This coincided with taking...
  7. Mtb1966

    Petition for $100m/year in ME/CFS research funding gets 30,000 signatures and counting

    Great work Mary! I don't use Facebook, has anybody already posted this to Linkedin? I'd be happy to share this with my network and then hopefully others will forward on to theirs.
  8. Mtb1966

    Epstein–Barr virus infection induce chronic fatigue syndrome

    Thanks Ljimbo that makes a lot if sense. I've been taking advice from a nutritionalist who has been looking to get the immune system working in a more balanced way. I've been taking two herbs, Filessa and Simba for 7-8 months and more less cut out alcohol, dairy, caffeine and sugar. Whilst I...
  9. Mtb1966

    Epstein–Barr virus infection induce chronic fatigue syndrome

    Thanks Heapsreal. That gives me plenty to discuss with the immunologist next week. The road map is an excellent document. Basically its fair to say your one post has been more informative and helpful than umpteen visits to doctors over the years!
  10. Mtb1966

    Epstein–Barr virus infection induce chronic fatigue syndrome

    After many years of permanently swollen lymph nodes in my neck and inflammation of spleen/liver blood tests last year showed Ebv vca igm positive Ebv na igg strong response Ebv dna not detected I had glandular fever in 1991. So it seems my immune system is overreactive rather than deficient in...