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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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    Long Covid: Summary of discussions

    Any updates on studies looking at (PHYSICAL abnormalities in) Long Covid...? I just read about recent study in Nature linking pre-existing anxiety & depression to L.C. The psychologizers are hard at work minimizing L.C., ridiculing people's ongoing struggles and suffering, etc. (It gets...
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    Taking B1 (thiamine) resolves GI problems - extreme nausea, sickness, low appetite and pain

    Thanks for sharing your success! You may seen this: https://www.healthrising.org/blog/2021/04/15/thiamine-b-1-chronic-fatigue-syndrome-fibromyalgia/ (Note: apparently for some, high dose B1 can CAUSE neuropathy; so, not a benign one-size-fits-all treatment, but worth trying...)
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    New Book on Epstein Barr

    Actually, (for what it's worth) at the moment, 74% of reviewers have given this book a 5-star rating, and many of the "scathing" reviews are just complaints that the Kindle version (not currently available) had "print" that was too faint to read. The 7 supplements Kines recommends (in the video...
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    Dumping excess water with methylfolate?

    Good question; I'm not sure, but for increased urinary frequency I found taking Boron to be slightly helpful. It seemed to help me hold on to water a bit more. And of course tweaking sodium and potassium might help. How much folate are you taking? Unfortunately I didn't see anything from the...
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    Deuterium detrimental to mitochondria?

    Any more experiences with deuterium depleted water, or the testing that cignature health offers? Yes, the water is expensive, but some PWC have the resources to try it... Is the theory too good or simple to be true? Presumably if it worked as well as these people claim, it would have spread...
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    How to reduce high dose methylfolate?

    You mention Fredd's protocol; you might want to post in this forum, where there seems to be more specific discussion of this... https://forums.phoenixrising.me/index.php?forums/detox-methylation-b12-glutathione-chelation.6/
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    Sulfur Deficiency and Sun Exposure

    I just came across the Miracle of MSM book, and found this thread. That praise from Dr. Cheney is about as high as a supplement can get in the CFS/ME world. Whoa! Anyone benefitting from MSM lately? I'm surprised there's not more interest on these forums in MSM, but maybe that's because...
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    Skin pain all over body...and what kind of doc to see

    Dr. Caro has posted a number of videos recently; this one explains this topic (or, topics--skin pain, small fiber neuropathy, myelin injury, autoimmune neuropathy, difficulty communicating to doctors the nature of the pain) exactly, and the skin punch biopsy procedure...
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    Dr. Gundry "Plant Paradox" diet

    FWIW, these foods mentioned above are all on Gundry's "The Just Say 'No' List of Lectin-containing foods": --bell peppers --chili peppers --potatoes --eggplant Consult the "Plant Paradox" book for the complete Yes and No lists. It may well be faddish. The whole lectin angle seems different...
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    Dr. Gundry "Plant Paradox" diet

    http://gundrymd.com/food-pyramid/ Starting a new thread here as I'm interested in hearing from anyone trying the diet in the latest book by Dr. Gundry "The Plant Paradox." Interesting concept (remove lectins), and maybe something to try for people who haven't seen progress with "healthy"...
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    Role of dietary modification in alleviating CFS symptoms: a systematic review

    http://gundrymd.com/food-pyramid/ I'm interested in hearing from anyone else trying the diet Dr. Gundry outlines in his latest book "The Plant Paradox." The diet overlaps with Dr. Terry Wahls' "Wahl's Warrior Diet," and Dr. Sara Myhill who pushes a ketogenic diet as of late. And probably Dr...
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    Skin pain all over body...and what kind of doc to see

    Here's one lab that does the skin punch biopsy: https://www.therapath.com/rheumatology More along these lines: "Fibromyalgia: It's a Nerve Disorder" http://powerhealthtalk.com/fibromyalgia-its-a-nerve-disorder.htm "Objective Evidence that small-fiber polyneuropathy underlies some illnesses...
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    Skin pain all over body...and what kind of doc to see

    Regarding allodynia, has anyone had a skin punch biopsy done to investigate damage to peripheral nerves? https://www.ncbi.nlm.nih.gov/pubmed/26497568 https://www.ncbi.nlm.nih.gov/pubmed/24719395 http://www.prohealth.com/library/showarticle.cfm?libid=19621 Has anyone here consulted with Dr...
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    How I found the underlying cause of my CFS--anti NMDA antibodies

    aealliance.org has some doctors listed, thanks for mentioning that site. Anyone used any labs in the U.S. for NMDA antibody testing? I found that Arup Labs seems to have a test... http://ltd.aruplab.com/Tests/Pub/2004221
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    How I found the underlying cause of my CFS--anti NMDA antibodies

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    "Exercise Tests Suggest Autoimmunity..." Cort Johnson

    Thanks for mentioning this lab. http://www.celltrend.de/cfs-diagnostics.html Were test results informative for you, or others with ME/CFS, do you know...?
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    Crps (local) = Cfs (global)????

    And, this 2002 Pubmed study is noteworthy: one lucky Lyme/CRPS patient treated with antibiotic therapy achieved remission from Lyme and CRPS... https://www.ncbi.nlm.nih.gov/pubmed/12478332
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    Crps (local) = Cfs (global)????

    Thanks for posting re CRPS and CFS and your research. I just came across this--a treatment in Verona, Italy with infusions of Neridronate, with purported success: http://crps-treatment.com/ I don't know anything about that drug, or if it might help with CFS, if it's been tried. Also, other...
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    Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers

    For D-Ribose, Dr. Myhill's website suggests 15gm per day: http://drmyhill.co.uk/wiki/D-ribose Not sure how this works, if one is to pursue the paleo/ketogenic diet that she recommends. One has to keep daily carb intake to under approx. 40 or 20 grams (I think it varies for each person) in...
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    BBC names Myhill website complainant

    Why would people here JUMP to defend this Jones clown? They act like they have no experience with bully denialist doctors determined to maintain their control and the outdated and abusive status quo. If someone has CFS and they've tried to get help from mainstream doctors, they have a belly...
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    Cheney on transmission

    up.........
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    Cheney on transmission

    Today, this is on the "XMRV Buzz" page... "Dr. Cheny (ahem Cheney's) Study - Dr. Cheney's study probably did little to answer any of the more pressing questions about XMRV because the tests were not done at an independent lab but it should prove quite valuable when the WPI's XMRV test is...
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    B-12 - The Hidden Story

    Burning/hypersentive skin is a horrible symptom. People talk about it on lymenet.org (search the archives). I of course don't know if Lyme is the cause for you, but at least people discuss it there. Far infrared saunas help the symptom for me somewhat; also stumbling on effective antibiotics...
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    Article: Dr. Cheney on the XMRV International Workshop

    There were more comments to this article a few days ago. Now they're gone, and there are only 2. What's the deal? If comments are removed for some reason, the admin. could at least indicate why.
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    Article: Lot of Questions at Int. XMRV WorkShop Q&A...and one BIG Answer?

    Frustrating. Does it seem to anyone else that all this is not headed in a helpful direction...? Less hope in discovering XMRV as a key player in CFS, and more of the same politicized discussion of it as just another pathogen (EBV, HHV6, Lyme, etc.) in the mix that might cause that bewildering...
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    Article: Dr. Peterson Update

    Did he get any more specific about XMRV infectiousness & transmission? Like possibly through saliva in addition to blood & sexual fluids, or not...? It would seem that if blood banks are now refusing CFS patients' blood, the CDC or somebody should come out with transmission prevention...
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    B-12 - The Hidden Story

    NT Factor...? Fredd, have you ever tried NT Factor or seen it benefit others? It's supposed to help energy by improving mitochondrial membranes; I'm wondering if using it in conjunction with adb12 would help mito function and speed up healing in this area. I'm considering trying it...
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    XMRV - testing urine

    Thanks for posting this. I like this part: "Ideal for use in: 1. Surveillance of Drug Resistant Pathogens 2. Epidemiologial Studies 3. Field Surveillance of Pathogens 4. Surveys" Who is doing any of those things...? I'm all for a good urine test over a blood test, but neat, new...
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    Interviewing Dr. Coffin

    But an antibody test is not available yet, right? So are you suggesting that in the future a patient might estimate how potentially contagious he is based on antibody test results? That may be useful for the future, but, like I said, "in the meantime sick people who would rather not make...
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    Interviewing Dr. Coffin

    Transmission Questions...? Maybe I missed something, but it seems there's no answer following these questions presented to the doctor: "TRANSMISSION Q. How/when is it transmitted in humans? Via saliva, sex, blood, sweat, sneezing droplets in the air, touching objects? How to avoid...