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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

  1. E

    COVID-19 Antibody Discovery Could Explain Long COVID

    Great find! I forgot about that study and didn't make the connection. I don't have a science background, so I don't have a deep understanding of the science, however, catalytic antibodies seem really intriguing for a few reasons. First, if I understand correctly, a disease caused by catalytic...
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    COVID-19 Antibody Discovery Could Explain Long COVID

    If this pans out, probably something like the CAR-T therapy that’s being trialed with success in Lupus. This is really interesting and checks a lot of boxes in terms of being explanatory. I’m really curious what those here who are skilled at picking apart papers like this have to say.
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    Catalytic Antibodies May Contribute to Demyelination in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

    Maybe the better way to think about this is that many people with MS might have ME/CFS as well. Those with both, and visible brain lesions, are likely to be diagnosed with MS. Given MS and ME/CFS’ fair degree of symptom overlap (and symptom variability), as well as the relative difficulty of...
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    "Scientists Offer a New Explanation for Long Covid"

    I have two questions for anyone who might know the answer or have a deeper understanding of the science. First, after reading the paper thoroughly, I do not understand the use of SSRIs. The paper deals with peripheral serotonin and not brain serotonin. I can't find anything to suggest SSRIs...
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    Prusty talks about his upcoming research on a podcast

    Rituximab, Cyclo, and CAR-T are my guesses. Although the Rituximab trial failed, the anecdotal results that led to the trial are still unexplained. Likewise, the recent potential Lupus cure using CAR-T therapy is pretty interesting and shows that things like Rituximab may not be enough to rid...
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    Tonsils, Appendixes, Gall Bladders and ME/CFS

    So forgive me if this is a patently stupid question or has previously been discussed. I’ve looked and don’t see anything in archived posts here regarding the question I am about to ask below. Likewise, I can’t find any mention of related research with a google search. My question is this. Is...
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    Dr. Ron Davis Hosts A Bedside Chat with OMF Correspondent Ben H

    Is there a metabolic trap update?
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    Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by OMF - DISCUSSION

    Here you go:
  9. E

    Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by OMF - DISCUSSION

    Dr. Davis addressed the finding of the patient without the damaging IDO2 mutation in a different video. He said they think that patient has a mutation to different gene involving a regulatory process of some kind.
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    Search for a Biomarker: Ron Davis interviewed on ME/CFS Alert

    Interesting. Dr. Davis still sounds pretty optimistic about the Metabolic Trap. In addition, it sounds like there is a potential explanation for the 1/70 severe patient in their IDO2 gene study who does not have any damaging mutations. I don’t think that information was shared at the symposium.
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    Help with MCAS

    The above article discusses Theoharides‘ investigation of intranasel administration of flavonoids. Interestingly, Cromolyn administered orally (Gastrocrom) did nothing for me. However, Nasel Crom, which is the same activate ingredient administered intranasally solved my brain fog/head pressure...
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    Help with MCAS

    Nasal Crom (OTC) provides me with tremendous relief. It has totally eliminated long standing sinus/head pressure and resulting brain fog/cognitive impairment issues.
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    My Experience at the Stanford Genome Center and w/ Ron and Janet

    It would seem to be a good sign that it’s almost September and they are still working on the metabolic trap hypothesis.
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    Could CFS/ME be an endothelial autoimmune disease, which triggers the cell danger respon

    My hunch is that, at least for a subset, their response to Rituximab suggests autoimmunity. Also, the thread discussing anecdotal success with Rapamune may also suggest autoimmunity. Another thought is that perhaps Rituximab responders have an autoimmune disease, whereas non-responders...
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    Could CFS/ME be an endothelial autoimmune disease, which triggers the cell danger respon

    How would leaky guy explain the effective, but delayed, response to rituximab in many?
  16. E

    Could CFS/ME be an endothelial autoimmune disease, which triggers the cell danger respon

    Apologies in advance for my very limited understanding of the principles underlying the below science. After recently relapsing following a 15 year remission, I've spent the past few weeks catching up on research and reading about the great work of Dr. Davis, Dr. Naviaux, and Dr. Fluge/Dr...