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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. C

    Iwasaki study on Long Covid

    https://www.nature.com/articles/s41586-023-06651-y
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    Has anyone gotten Silver Diamine Fluoride for dental cavities?

    I too have researched SDF. I was surprised to learn about this substance, and I asked my dentist about it. He said he had never heard of it. I immediately changed dentists. The next one did know about SDF but was cautious about saying much, for the obvious reasons. Youtube videos give a pretty...
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    Lancet publishes study on SIM01 in long covid

    From the Lancet publication "The synbiotic preparation (SIM01) is a micro-encapsulated lyophilised powder containing 20 billion colony-forming units of three bacterial strains, B adolescentis, Bifidobacterium bifidum, and Bifidobacterium longum with three prebiotic compounds including...
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    Lancet publishes study on SIM01 in long covid

    What interests me is the micro-encapsulation of three bifidobacterium and claims that these items reach the gut and colonize. I wonder if this is true? This Lancet publication of this Chinese study gives some specific credibility to SIM01. This formulation of SIM01 seems slightly different than...
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    Lancet publishes study on SIM01 in long covid

    This from Lancet regarding a study on SIM01 and Long Covid published from China lab https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(23)00685-0/fulltext
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    My experience on plasmalogens

    Hi, Dayan Goodenowe of Prodrome has done a lot of work on Plasmalogens in relation to aging/dementia. He has written a coherent book on Alzheimers. To me, who has watched a great many YouTube videos of various practitioners/researchers, Davyan Goodenowe seems more convincing than most with a...
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    Pleconaril and Ribavirin treatment of enterovirus in type 1 diabetes

    This is an interesting study, published in Nature. https://www.nature.com/articles/s41591-023-02576-1 Pleconaril, an unapproved drug to treat enterovirus, was used along with Ribavirin against enterovirus (presumably Coxsackie B4) in new onset Type 1 diabetes, Chris
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    The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome (Hanson, 2023)

    I understand what you are saying. However if you were a parent whose adult daughter has ME, and that daughter has had consistently high viral titers via ARUP labs to Cox B3 and B4 for over twenty years, and have a son who is type one diabetic, and the father himself has elevated titers for...
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    Biomesight

    Hip, I was diagnosed in 2017 via colonoscopy with Lymphocytic microscopic colitis. The gastro guy wanted to put me on Budesonide but I wasn't interested. I went through the Pepto Bismol thing and then the Imodium thing, without much result, except getting heightened tinnitus from the PB. So I...
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    The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome (Hanson, 2023)

    Dr. Chia describes that the onset of ME/CFS as he knows it involves several hits on the immune system over a period of time. One too many and you get ME. Chris
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    Amy Proal's latest review of viral persistence in Long Covid/PASC

    Amy Proal's new position paper on #SARS-CoV-2 reservoir (viral persistence) in Long COVID or post-acute sequelae of COVID https://www.nature.com/articles/s41590-023-01601-2
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    The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome (Hanson, 2023)

    Amy Proal's position paper on viral persistence in Long Covid. https://www.nature.com/articles/s41590-023-01601-2#MOESM1
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    The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome (Hanson, 2023)

    Thanks for this. I have wondered about a Hepatitis vaccine that my daughter got several years before ME. Dr. Chia always speaks of multiple hits. Chris
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    The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome (Hanson, 2023)

    I am not saying enterovirus is a cause. I am only asking why the disinterest in looking. There is a history. If you read the link in the next post, the connections in UK were repeated and substantial. My only question is why has enteroviruses dropped off the list of viruses explored by...
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    The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome (Hanson, 2023)

    In 2014 I was in Tustin CA for a lecture of Dr. David Bell, a seminal physician in ME/CFS research. Dr. Bell asked me to arrange an appointment for him with Dr. John Chia. We went to Dr. Chia's office and Dr. Chia gave Dr. Bell a two hour lecture on the Enteroviral. connection to ME/CFS. Dr...
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    The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome (Hanson, 2023)

    Maureen Hanson has read the literature on the viral origins of ME. There is ample evidence that Coxsackie B4 virus and other enteroviruses were connected to ME in the UK some years ago. Somehow this thread has been lost and forgotten, except for the work of Dr. John Chia, who cured his own son...
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    Vagus nerve and sleeping (sleeping on right side may be best)

    This is a helpful post. Thanks for this. What exactly were you able to determine seemed to be permanently altered in taking this probiotic? It seems somewhat difficult to have probiotic material actually colonize. Chris
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    Hanson paper

    Yes, that is understandable. In the 22 years I have been around this illness, herpetic viruses have been the most studied or predicted to be involved. I am not saying they are not. However, there is an older history, from the UK and other places, that points in the direction of Enteroviruses...
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    Biomesight

    This is an interesting subject. My family and I do Biomesight testing. (We used to do Ubiome.) My daughter has ME. The rest of us are controls, more or less. Generally the Biomesight test has some consistency in repeated testing. One instance involved a major shift in a way that was not able...
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    Hanson paper

    Thanks. I can understand your point of view. In this disease, it seems to me that history is important. When Dr. John Chia's son got sick in the early 2000s, Dr. Chia went back and read the medical literature about enteroviral outbreaks and ME in the UK in the second half of the 20th century...
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    Hanson paper

    https://journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1011523 Maureen Hanson's paper on potential viral cause of ME/CFS. This seems and has seemed an important viral connection, now for many years. There is a long history that can be accessed. Hanson's Conclusion "Ignoring...
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    100% Convinced my CFS/Fibro is Mycoplasma infection based

    Hi, Is there a good lab that does accurate mycoplasma testing? Years ago I used MDlabs, Redlabs and Infecto Lab. Regards, Chris
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    HSV-6 EBV superinfection theory for SEID CFS

    Hi, This is fascinating. Are you HHV-6 positive by antibodies or PCR or both? Thanks, Chris
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    Paxlovid study on Long Covid

    https://medicalxpress.com/news/2023-04-clinical-trial-paxlovid-effectiveness-covid.html Iwasaki and Krumholz are finally beginning their trial of Paxlovid and Long Covid. Not sure 15 days is enough but maybe this trial will move things along and perhaps bring some clarity to the general...
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    https://youtu.be/fsxnw2caw5c Thiamine deficiency as a main contributor to cfs

    This discussion is interesting and complex. What happened about the old-fashioned idea of thiamine injections? Chris
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    New England Journal of Medicine - Eiger's Interferon Lambda

    https://www.nejm.org/doi/full/10.1056/NEJMoa2209760?query=featured_home
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    "Long COVID: We Are Here!" Webinar with Dr. Lipkin & Dr. Levine

    Lipkin - "What I think in terms of what we need to do now, and I would encourage anybody involved in this call to pursue this, is to look at the ME/CFS literature very carefully because I think you will find clues there that may be helpful in unraveling in what's going on in Long COVID." And...
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    X cells -"something in the blood"

    Here is something interesting. X cells in diabetes https://www.cell.com/cell/fulltext/S0092-8674(19)30505-7?_returnURL=https%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS0092867419305057%3Fshowall%3Dtrue&fbclid=IwAR1vXax5g4p8kJk5x77rJCmliElsduQYyISbWLYejGHwwFlO1Xj42LCr73Q...
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    What’s Up With Ivermectin?

    Hip, Have you ever tried Ivermectin for Coxsackie B? Do you know anyone who has? Chris