• Welcome to Phoenix Rising!

    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. MonkeyMan

    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 so exciting if checkpoint inhibitors are effective treatment for ME/CFS. Since these drugs are available NOW, we patients would not have to wait for clinical trials, which take years and years.
  2. MonkeyMan

    My CFS experience ending with BARD and ChatGPT AI

    Brilliant work, @pgrovetom. As I and others have written on this board, AI/Machine learning is likely to be what solves ME/CFS, and you've provided a fine example of its potential. I'm not smart enough to delve into the deep science like you did, but I've ordered Forskolin from Amazon and am...
  3. MonkeyMan

    Something exciting is coming in November

    Exactly.
  4. MonkeyMan

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

    Yes, thank you @Mimicry. The stuff you mention (BodyBio Gut Health Supplement) is also available on Amazon, BTW. I'm going to try it. Speaking of the gut, I recently made a drastic change in my diet - cutting out all white flour, including pasta. Just 100% whole grains. And, since I made the...
  5. MonkeyMan

    Something exciting is coming in November

    Quilp, I agree with every word you wrote. But even though the OMF and the NIH may be spinning their wheels, there is a lot else going on that keeps me going, nearly 40 years into dealing with this barbaric condition. BC-007 may be the treatment that we're waiting for; we will know next summer...
  6. MonkeyMan

    Something exciting is coming in November

    I'm so done with OMF. All the hopey hype, just to get more $$$. Hope I'm wrong this time.
  7. MonkeyMan

    Why do I feel worse after resting?

    Not sure about after resting, but I definitely feel worse if I sleep well. Like my body is producing some chemical during my sleep which incapacitates me in the daytime, and the more sleep I get, the worse I feel.
  8. MonkeyMan

    Why i don't think there will be a cure for ME

    @Dude, I agree with your post 100%. Your first two bullets, I believe, correctly imply that the right treatment could bring many patients back to "normal", and do so VERY quickly. For many with ME/CFS, something is obviously gumming up the works, but it is not "hurting us", so to speak. An...
  9. MonkeyMan

    Apigenin : A proposed research target for amelioration of ME/CFS symptoms

    Interesting! As I've posted elsewhere, this particular apigenin supplement has made a huge, positive difference in how well I sleep. I believe the dose is considerably larger than most available apigenin supplements. Sadly, it hasn't had a noticeable impact on my ME/CFS itself. P.S. I have no...
  10. MonkeyMan

    New Article on Long COVID fatigue

    https://www.theatlantic.com/podcasts/archive/2023/08/fatigue-can-wreck-you/675030/
  11. MonkeyMan

    BC-007: Successful drug against Autoantibodies helps with long COVID

    Wow. Should we dare to hope?????
  12. MonkeyMan

    the best treatments I've found

    The best "treatments" I've found: 1) A warm, 10-15 minute shower. I feel really good after it, and more cognitively alert. Effects last about an hour. 2) Edible THC gummies. My ticket to feeling good for a day. Just have to be prepared to be mildly depressed the next day. 3) Low humidity...
  13. MonkeyMan

    Do we need a miracle ?

    This January '23 blog from Cort gives me hope.
  14. MonkeyMan

    Do we need a miracle ?

    Yes, although I would rephrase the goal as "Find an effective treatment for ME". :)
  15. MonkeyMan

    Amsterdam scientists find an enzyme (IDO2) that could be the culprit of #LongCovid: Prolonged IDO2 activity & associated cellular stress in PASC.

    Ok, I know this premature, but if this cancer drug is shown to be helpful, might it soon be available to LC and ME/CFS patients on a compassionate basis (like HIV drugs were)? Or do we have to wait years and years for its approval????
  16. MonkeyMan

    What has helped you with sleep/insomnia - post links

    Here's a protocol I've developed that allows me to sleep like a baby after years of insomnia: This stuff (2 capsules every evening, an hour before bed) - helps me sleep better than anything I've ever tried. Taking a Claritin every day at 5pm. Avoiding blue light (limiting my cell phone and...
  17. MonkeyMan

    BC-007: Successful drug against Autoantibodies helps with long COVID

    Ah, now it does! I'm talking about the person who claims to have improved. The non-LC patient who claims to be part of the trial - has she claimed anything about results? If not, then I think we can ignore that there is one "bad apple" (and hopefully not many more) in the bunch, who is not...
  18. MonkeyMan

    BC-007: Successful drug against Autoantibodies helps with long COVID

    For your "best case scenario": if this person wasn't in the trial, then they couldn't have received the BC007, correct? How is that the "best case scenario"? For your "second best case scenario", if they got placebo, that would be worse news for patients than if they were in the BC007 arm, no...
  19. MonkeyMan

    BC-007: Successful drug against Autoantibodies helps with long COVID

    Well, I agree that at least one person claiming to be in the trial should not be in the trial, but nonetheless, the one improving may be a legitimate LC patient.
  20. MonkeyMan

    BC-007: Successful drug against Autoantibodies helps with long COVID

    We can probably figure out whether it's the same people. @Osaca Does SirchMarina claim to have "improved dramatically and interestingly keeps getting even better over time"? (I don't use Twitter so I can't check this). @tcamde Any more details you can share about the person you're referring to...
  21. MonkeyMan

    BC-007: Successful drug against Autoantibodies helps with long COVID

    Wow, this is very encouraging news. Thank you for posting, @tcamde. Let's hope the 2 were on placebo and the 1 on active treatment! Would you know when the patients will learn which arm they were in?
  22. MonkeyMan

    Ron Davis Update

    Did he mention the nanoneedle? Any chance you can post the link to this? Thank you in advance.
  23. MonkeyMan

    Ron Davis Update

    Apparently NOBODY knows. Great job keeping the patient community up-to-date, OMF!!!!!
  24. MonkeyMan

    Pfizer's 7 hypotheses on the possible causes of long COVID

    It's great to see that a company with as deep pockets as Pfizer is interested in unraveling this riddle (although who knows how much, or how little, $$ they are actually allocating to it). What is so utterly tragic is that most, if not all, of these 7 possible causes were considered possible...
  25. MonkeyMan

    Tissue specific signature of HHV-6 infection in ME/CFS (Bhupesh Prusty)

    I really feel like we were sold a bill of goods with the "nanoneedle". We were told it would identify what is the problem in the blood, and, years later, have never gotten a convincing explanation for why it just disappeared.
  26. MonkeyMan

    Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

    It certainly is. @Janet Dafoe, can you shed any light on why you all resigned?
  27. MonkeyMan

    Will Artificial Intelligence solve the riddle of ME/CFS and find an effective treatment?

    It would seem that our scientists are not able to solve ME/CFS, so will AI figure it out?
  28. MonkeyMan

    Anyone got a good constipation remedy?

    What's cured my constipation? A combination of the following: Whole-grain bread throughout the day At least one barely-ripe banana per day One of these every morning
  29. MonkeyMan

    I need to sleep! Help !!!!!

    The stuff I'm taking about is literally 5-10 x more concentrated than most apigenin on the market. I suspect that is why it's been so helpful for me.
  30. MonkeyMan

    I need to sleep! Help !!!!!

    This stuff (2 capsules every evening, an hour before bed) helps me sleep better than anything I've ever tried.