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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. junkcrap50

    WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome

    Yes. I have. See this article below that discusses it's use specifically to treat latent EBV infected T-Cells. Scroll down to "Antiviral Therapy" & "Targeting the EBV-infected T cells". (It's for a different disease, but same application could be used in CFS.) The paper also lists a couple other...
  2. junkcrap50

    Successful treatment of ME/CFS using hydrogen gas: four case reports. 2024

    FYI: Paper published by manufacturer, Miz, of hydrogen inhalation machine. However, Miz's products do seem be the most used in other, non-affiliated, hydrogen water studies. You can buy their machine for ~$2700 through some Japanese sites.
  3. junkcrap50

    Insomnia from valacyclovir

    Are you sure it's valacyclovir causing the insomnia? I'm not saying that because I'm doubting you or your experience, but to think through other possibilities. Seeing how the insomnia tracked with you stopping and restarting it and intolerance to very low doses, it sure suggests it being the...
  4. junkcrap50

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    It would be very worthwhile to be able to donate our bodies to a ME/CFS research. For autopsy research studies or biopsy/tissue samples for biobanks. Unfortunately, this isn't discussed more or has much support because it may encourage suicides. Of course, lack of funding is also a huge...
  5. junkcrap50

    VAGUS NERVE STIMULATION

    Sorry, more like $150 not $120. I got my info from this person who has tweeted about it and then read about it: https://twitter.com/search?q=%40chydorina%20ultrasound&src=typed_query She has linked to this one: https://www.tenspros.com/us-pro-2000-portable-ultrasound-du3035.html But if you...
  6. junkcrap50

    VAGUS NERVE STIMULATION

    Vagal nerve stimulation can also be done by applying ultrasound to your spleen. There is research to back this up. You can buy simple ultrasounds on Amazon for ~$120.
  7. junkcrap50

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    Later says: So maybe, if our leaky guts are releasing LPS in us, our guts will help with the PD1 blockade. Lol. More seriously, from what it seems about their chronic viral model, these mice had widespread, active, raging infection throughout their body, which is not exactly occurring in...
  8. junkcrap50

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    I'd be interested to see the used dosage for the Rapamycin, in T-cell exhaustion & in the trial. It was my understanding, which I'm not confident I have it correct, the rapamycin trial was using low dose rapamycin, such as that used for autophagy in anti-aging. I do not think the low dose...
  9. junkcrap50

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    I think this vibration therapy stuff & related things are getting this thread off topic. Surely there's another thread on that topic.
  10. junkcrap50

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    @Hip, how do sudden/instant remissions (either spontaneous or from a supplement/treatment) that seem like a switch was flipped or temporarily very short remissions, where the ME/CFS states flips back and forth within a short time frame, fit with your theory here? Seems inconsistent with...
  11. junkcrap50

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    What a crock of shit! Lol this is what the effort preference test and methods science is? Wow. And they chose to lead with THAT in in big paper and all the press releases?!? Heroic work @Murph for digging into it and explaining it - in actuality, really, exposing it! What day of testing was...
  12. junkcrap50

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    Summary articles by Scientific American, NIH Press Release, & NY Times: https://www.scientificamerican.com/article/people-with-myalgic-encephalomyelitis-chronic-fatigue-syndrome-may-have-an-exhausted-immune-system/...
  13. junkcrap50

    TruDose platelet therapy

    Never heard of it. Looks/sounds like literally PRP but they give it back to you via IV, which doesn't really make sense. They're putting back into you exactly what they took out, minus some serum. And they're not taking away enough serum to make any difference, unless they're drawing very...
  14. junkcrap50

    Filgotinib (JAK1 inhibitor) future of CFS/ME treatment?

    @sam.d hi, I'm also interested in an update. Anything else you may have learned along the way related to it too? Have you heard of any other patients' experience on filgotinib?
  15. junkcrap50

    Jen brea. Interesting interview

    Thanks. Yeah I sort of remember her mental health episode at the airport. But I remember she "regressed" or had to have another surgery or something that she announced. Maybe it was a really temporarily short thing and not a real regression. Glad to hear she's cured. I assume cognitively cured...
  16. junkcrap50

    Jen brea. Interesting interview

    I thought her cranocervical/tethered cord surgery ended up only providing temporary relief and she regressed back to ME/CFS.
  17. junkcrap50

    Advancing Research and Treatment: An Overview of Clinical Trials in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Future Perspective

    Thanks. I didn't know the background story to the WASF3 finding. I wonder if a similar approach would be helpful to research. Pick 1 patient, drill deep down into them & their dysfunctions, and then see if it maps to ME/CFS.
  18. junkcrap50

    GcMAF capsules

    There is sort of a saga about GcMAF with regards to products. You will have to read & search on Phoenix Rising to find out more about it. Perhaps someone who had success with GcMAF will comment and explain it more. But there's a lot of past posts to read about it. The story as I understand is...
  19. junkcrap50

    Advancing Research and Treatment: An Overview of Clinical Trials in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Future Perspective

    Could you link the paper of the case study? Or more info about what NIH tests and things were done? I hadn't heard of this story. I don't know about this case specifically, but I can comment more generally. Extremely lucky is the answer. Having caring doctors & wealth are not much help for this...
  20. junkcrap50

    Role of pharmacological activity of autoantibodies in ME/CFS

    Nice large study. 325 ME/CFS patients, 130 healthy, 455 total patients! Hopefully some good results will come out. Except unfortunately, not all ME/CFS patients have autoantibodies and those that do don't have the same ones. So hopefully the study size is large enough. What's the date of this...
  21. junkcrap50

    Heterogenous circulating miRNA changes in ME/CFS converge on a unified cluster of target genes: A computational analysis (Kaczmarek 2023)

    Absolutely incredible work @necessary8 ! Bravo, bravo, bravo! This seems like breakthrough work. Have you contacted any ME/CFS researchers who may benefit from this research? I recall you had developed a pretty well thought out theory of ME/CFS several years ago, although it was not related to...
  22. junkcrap50

    ME/CFS patient goes into remission after taking "elixir of youth" GDF11

    Yeah I'm also interested in an update.
  23. junkcrap50

    Does anyone have a ME-literate MD or DO in the Portland OR area for filing SSDI claim?

    I too was going to suggest @Learner1 as I thought she lived in Washington/the Northwest. It might be hard to find a ME-literate doctor, but perhaps an integrative/functional doctor could help.
  24. junkcrap50

    My CFS experience ending with BARD and ChatGPT AI

    Wow. Pretty incredible story. Good work!
  25. junkcrap50

    Update on my "anti-purinergic journey" & sharing my new therapy of negative voltage

    Very cool and all. I’ve been interested and waiting to hear how your antipurigenic therapy has worked. To the extent you have done and are planning on going (CO, earthing,etc), I must ask, why don’t you just buy suramin and use the real thing? This was not possible for many years. But there...
  26. junkcrap50

    My experience on plasmalogens

    Shark Liver Oil would probably be the thing to start with. Shark Liver contains many types of plasmalogen precursors (alkylglycerols), Prodrome only has one alkylglycerol per product (as far as I can tell, see quote below). Table of the many alkyl glycerol types in Shark Liver Oil: Source...
  27. junkcrap50

    My experience on plasmalogens

    Plasmalogens are a more narrow type of phospholipid. The goal with supplementing them is to replace the oxidized ones and refresh your cells with better functioning membranes. So, basically the same goal as taking high dose phospholilpids, but I'm not sure how that is or isn't effective. I'm...
  28. junkcrap50

    My experience on plasmalogens

    Plasmalogens are a particular type of phospholipid that make up an important part of cell membranes and cell organelles, like mitochondria. They are a large part of the membranes of neurological cells like brain cells, glial cells, myelin, etc. They have been found to be low in chronic, age...
  29. junkcrap50

    My experience on plasmalogens

    Prodrome actually doesn't contain any plasmalogens, but rather the precursors (alkyl glycerols) to them. It is actually better that way. Plasamalogens themselves don't survive the stomach. Also, the precurors are made into a wider range of plasmalogens. And there is research showing the...
  30. junkcrap50

    Tips for Finding Reliable Prescription-Free Online Pharmacies

    Some, but not most, Indian Pharmacies will guarantee their delivery. If customs confiscates it, then they'll ship your order again. Usually you just have to pay the shipping costs a second time. But you might find a place who will do it again for free.