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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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  1. beaverfury

    R U Amygdalized?

    Hi @susan ! You still about ?
  2. beaverfury

    has anyone completely lost their ability to feel

    Hi @Aerose How are you doing lately ? I sympathize with you. At different times I have felt some of the symptoms you talk about. After 5 years of illness I am starting to enjoy music more of late. For a couple of years there in the beginning it didn't elicit the emotional response it used...
  3. beaverfury

    Articles on the release of the IOM report

    http://www.scientificamerican.com/article/chronic-fatigue-syndrome-gets-controversial-redefinition/ 'The report also attempts to simplify diagnostic criteria for the disease, addressing concerns that previous definitions were too complex. For instance, people who suffer from a mental illness...
  4. beaverfury

    Alfacalcidol. New treatment for MS fatigue

    'New research has also found chronic Lyme patients have higher amounts of Borrelia-specific FoxP3 than healthy controls, indicating regulatory T cells might also play a role, by immunosuppression, in the development of chronic Lyme disease. The culmination of these new and ongoing immunological...
  5. beaverfury

    Alfacalcidol. New treatment for MS fatigue

    But good for that 14%. I'm clutching at straws, I know. Just more searching and speculation for something to improve my condition. Alfacalcidol has a weaker impact on calcium metabolism[1] and parathyroid hormone levels[2] than calcitriol, however alfacalcidiol has significant effects on...
  6. beaverfury

    Alfacalcidol. New treatment for MS fatigue

    The Multiple Sclerosis Journal recently published the results of a study by researchers from Israel who measured the effect of vitamin D analogue, Alfacalcidol, on MS-related fatigue. In this study, 158 MS patients with significant fatigue received Alfacalcidol or a placebo. The researchers...
  7. beaverfury

    New Lyme info from Stanford…possible treatment

    I can't find that link, valentinelynx. Would like to read it in more detail if anyone has it.
  8. beaverfury

    What do you think of the IOM's new name for ME/CFS? VOTE!

    Undecided. I feel a whole new raft of jokes coming on at our expense. I've worked on many manual labouring sites where anyone slacking off is said to have 'blown a heart muscle' or has 'piss weak disease'. Now, 'he's got exertion intolerance' will get into the lexicon. If it gets noticed at...
  9. beaverfury

    Ampligen produces 100% Survival Rate in Ebola Virus Rodent Study

    @cigana beat me to it in this thread http://forums.phoenixrising.me/index.php?threads/ampligen-shown-to-inhibit-ebola.34549/ I am interested in the possibility of Ampligen popping up again for use in me/cfs, riding on the tail of Ebola. Cort has blogged about this...
  10. beaverfury

    Ampligen produces 100% Survival Rate in Ebola Virus Rodent Study

    http://www.streetinsider.com/Press Releases/Hemispherx: U.S. Army Scientists (USAMRIID) Find Ampligen(R) Produces 100% Survival Rate in Ebola Virus Rodent Study/10215281.html Ampligen® (rintatolimod), an experimental therapeutic, was utilized with a mouse adapted Ebola virus using multiple...
  11. beaverfury

    Study links genetics, anti-nerve agent pills to GWI

    Looks like the gulf war veterans face the same old bullshit that me/cfs folk face when claiming benefits. http://www.militarytimes.com/story/military/benefits/veterans/2015/01/27/persian-gulf-war-illness-nerve-agent-pills/22363913/ 'VA encourages former troops with Gulf War illness symptoms to...
  12. beaverfury

    "Real Housewives of Beverly Hills" star Yolanda Foster Battling Lyme disease

    It was reported that she had stem cell treatment in South Korea Dec 2014. I wonder how that is affecting her. I have been hoping that stem cell therapy, in one form or another, would save us. Doesn't seem so, in it's current applications.
  13. beaverfury

    Peridontal disease, chronic (occult) inflammation and neuroinflammation

    Hi @Marco How's your teeth problems going ? Just wondering if you have ever checked out @Ian 's cavitation thread ? http://forums.phoenixrising.me/index.php?threads/my-recovery-story.7912/ I pulled up this as well on neurospirochetosis , which mentions periodontal pathogen spirochetes...
  14. beaverfury

    A journey into illness. Harvard Gazette

    Good quote at 51.50, from Alphonse Daudet (who had syphilis) "Pain is always new to the sufferer but loses it's originality for those around him" . "Everyone will get used to it, except me".
  15. beaverfury

    A journey into illness. Harvard Gazette

    It was interesting to hear O'rourke quote Noel Rose (at 13.45) talking about autoimmunity, "the patient is the loaded gun, the environment is the trigger". I prefer the third aspect of randomness of antibody production that Jonathon Edwards puts forth as happening in Rheumatoid Arthritis (if I...
  16. beaverfury

    A journey into illness. Harvard Gazette

    Thank you, Bob !
  17. beaverfury

    A journey into illness. Harvard Gazette

    Why can't I embed the video ? Dammit
  18. beaverfury

    A journey into illness. Harvard Gazette

    http://news.harvard.edu/gazette/story/2014/12/a-journey-into-illness/ “I got sick the way Hemingway says you go broke: gradually and then suddenly,” wrote Meghan O’Rourke in “What’s Wrong With Me?,” a 2013 New Yorker article that chronicled her struggles with a mysterious illness. What was...
  19. beaverfury

    Did NSAIDS start this....

    But maybe not. Thank God for Jonathon Edwards knowledge and critical thinking. It seems that autoimmune reactions may not be simple cause and effect. He discusses autoimmunity and leaky gut on this page. http://forums.phoenixrising.me/index.php?threads/do-mes-cause-cfs.31930/page-15 I hate...
  20. beaverfury

    Did NSAIDS start this....

    @Chronicdave http://www.ncbi.nlm.nih.gov/pubmed/24417613 Role of small intestinal bacterial overgrowth in severe small intestinal damage in chronic non-steroidal anti-inflammatory drug users. Not convincing research but I am just considering the connection to autoimmunity. Having...
  21. beaverfury

    Peridontal disease, chronic (occult) inflammation and neuroinflammation

    Very strange that the infection could have been smouldering underneath for so long without you knowing. I hope that treating it brings some good change in your health. I had a tooth infection the week I got my viral onset. Extreme pain in the top jaw. Always wondered about the connection to...
  22. beaverfury

    How long after ME/CFS onset did you start getting PEM ?

    I was not aware of any physical PEM until several months after the viral onset of my ME/CFS. To be sure, I wasn't doing much to bring on PEM as I didn't have the energy to get out there exercising. But from memory it became a bigger issue as time went on. (The first year has become a blur now)...
  23. beaverfury

    PEM - What do physical and mental exertion have in common?

    If activated microglia are a commonality in both mental and physical PEM, what is the insult they are reacting to ? What is the benefit of setting off inflammation in the brain after physical exertion ?
  24. beaverfury

    PEM - What do physical and mental exertion have in common?

    I'm still trying to get my head around your model, Marco. It's very hard to discuss this when we don't yet have unique terms for the unique physiology of me/cfs. Plus, I just plain can't understand much ! The tipping point for me, mentally or physically, is in the signalling, "I am exerting...
  25. beaverfury

    PEM - What do physical and mental exertion have in common?

    ..And dodgy glucocorticoid receptors ?
  26. beaverfury

    PEM - What do physical and mental exertion have in common?

    Nah! I just plucked them out at random ;) Actually , Hip has already dealt with this, here - http://forums.phoenixrising.me/index.php?threads/crashing-after-joyful-get-togethers-with-family-and-friends.32814/