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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. frozenborderline

    Get Me Away From Here I'm Dying, ft Jeanette Godby -- a podcast series about living with ME/CFS, spirituality, the afterlife, mold avoidance, and more

    I recently posted a two part episode on my podcast about ME/CFS featuring fellow patient and mold avoider, Jeanette Godby. We discussed a lot of topics, to name a few, mold avoidance, parenting while chronically ill, environmental illness, the afterlife, the demonology of industrial capitalism...
  2. frozenborderline

    Vision problems , most likely neurological

    Well I didn't improve my eye issues, so it wasn't something that ended up helping
  3. frozenborderline

    Vision problems , most likely neurological

    Well, given that I was diagnosed with some kind of vague post concussion like eye issue/light sensitivity by a neuro ophthalmologist, I know that the issue isn't just in the eye, and that it is connected to a neurological and possibly systemic issue. That said, it helps in trying to figure...
  4. frozenborderline

    Vision problems , most likely neurological

    I don't understand how that would explain anything, or help fix it , bc I have POTS and low blood volume and neuropathy , all diagnosed , and yet no doctor suggested that those things explained my eye symptoms and light sensitivity. I've not heard of that as an explanation for eye issues
  5. frozenborderline

    Indigenous people of siberia tolerate tick borne infections better, have more resilience

    https://drive.google.com/file/d/1BBLa4FTv3LgBoZJNOtU9RQeraZ__026G/view?usp=drivesdk Interesting. Could validate environmental/dual factor theory of @Hip or it could be their microbiome or some epigenetic factor.
  6. frozenborderline

    Solving the constipation side effects of opioids

    Thanks but I sort of fixed this problem already , relistor works pretty well
  7. frozenborderline

    [Indie Band] Belle and Sebastian Frontman: "Living with ME makes me feel like a non person "

    https://www.independent.co.uk/news/uk/myalgic-encephalomyelitis-scottish-parliament-scotland-msps-holyrood-b2177301.html He's also an OMF ambassador. He's one of one of most prominent famous people with our illness. Albeit more mild than a lot of us bedridden folks. But apparently early on he...
  8. frozenborderline

    The Controversy of Antioxidants

    Again all nick lane was saying was that antioxidants and oxidative stress or free radicals aren't an importsnt factor in aging or a panacea. But with cfs a lot of responses to things --meds, exercise , chemicals , mold, is all different than normal people or even people with unrelated...
  9. frozenborderline

    The Controversy of Antioxidants

    Oh yeah. Chinese medicine uses licorice as a hardcore corticosteroid replacement. It raises cortisol and aldosterone a lot iirc. Natural isn't better always tho and in this case it's probably worse and more dangerous than just getting on some kind of targeted treatment for autoimmune disease...
  10. frozenborderline

    The Controversy of Antioxidants

    I've started skimming this book ... I'm severe so I can only get thru a bit at a time without crashing. Its very interesting, I find the whole field of bioenergetics and ideas about entropy and thermodynamics of biological life and self organizing systems and the origin of life so fascinating...
  11. frozenborderline

    Who are your favorite health gurus?

    I second checking this book out. Its dense. But if one is less than severely ill ans have any energy to spare spare it on this. Its been difficult to read while crashed but I'm convinced it will lead to a minor paradigm shift in his we think about bioenergetics and evolution which could...
  12. frozenborderline

    Nutraceutical recommendations for COVID-19 from IFM

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7285147/
  13. frozenborderline

    Nutraceutical recommendations for COVID-19 from IFM

    Acts differently at different dose ranges
  14. frozenborderline

    Long covid has forced a reckoning for one of medicines most neglected diseases

    "ME/CFS specialists, already overwhelmed with demand for their services, now have to decide how to best use and spread their knowledge, at a time when more patients and doctors than ever could benefit from it. Kaufman recently discharged many of the more stable ME/CFS patients in his care—Stoops...
  15. frozenborderline

    Long covid has forced a reckoning for one of medicines most neglected diseases

    Now, what kind of disturbs me is this article talks about the few me/cfs docs that are left kicking out me/cfs patients to take long covid patients. And if you look at long covid forums a lot of them are contemptuous toward the idea that they have me/cfs or that patients with me/cfs have...
  16. frozenborderline

    Long covid has forced a reckoning for one of medicines most neglected diseases

    https://www.theatlantic.com/health/archive/2022/09/mecfs-chronic-fatigue-syndrome-doctors-long-covid/671518/ An article by Ed Yong, about how long covid is forcing people to address the situation with me/cfs. I'm not sure he's right about that but it's worth a read and he is getting our...
  17. frozenborderline

    A new discovery about ecological toxicity sheds light on the ME/CFS epidemic

    It's closer to 9 million people now (about three percent). Still a lot though
  18. frozenborderline

    MEAction protest at whitehouse

    Meaction made an amazing effort so I'm not blaming them. But the nytimes story and some of the others focused more on covid and bidens controversial response to pandemic rather than on the specific demands relating to me/cfs And when I search YouTube specifically nothing comes up. I'd upload...
  19. frozenborderline

    MEAction protest at whitehouse

    Does anyone have video that could be uploaded onto YouTube Anyway this article came out on a leftist website that appears to cover a lot of big stories and they covered this one : https://www.wsws.org/en/articles/2022/09/20/cgmc-s20.html
  20. frozenborderline

    MEAction protest at whitehouse

    It's good that some news sites got the story. But weird that none of the footage is up on YouTube from what I can see
  21. frozenborderline

    MEAction protest at whitehouse

    @ChloeC
  22. frozenborderline

    MEAction protest at whitehouse

    I'm surprised to see this hasn't been discussed more. And I'm disappointed to see so little coverage. These protestors risked major crashes and arrest to do this. And they weren't rewarded with great media coverage or even a lot of support from those of us who couldn't make it, on social media...
  23. frozenborderline

    Cold sensitivity and its etiology--need to solve this urgently

    Pretty sure just a mixture of midazolam propofol and fentanyl like with most major surgeries I actually had three of them , but I only mentioned the one that put the hardware in bc I think the hardware may be connected. I don't know my body temperature. Currently. It's always ran a bit low...
  24. frozenborderline

    Cold sensitivity and its etiology--need to solve this urgently

    I guess it could be related to hypothalamus and pituary gland stuff: @rpapen77 could you check that out ?
  25. frozenborderline

    Cold sensitivity and its etiology--need to solve this urgently

    I've had cold sensitivity before the surgery but it got better when in good air. I even slept in a van outside in a new jersey winter pre surgery because the air was good . And the cold sensitivity wasn't usually as extreme. Then after the surgery it got worse and in winter I needed heat...
  26. frozenborderline

    Cold sensitivity and its etiology--need to solve this urgently

    Oh okay so thoracic. Mine is cervical and involves skull too i don't know if that makes a difference. I don't know whats going on.
  27. frozenborderline

    Cold sensitivity and its etiology--need to solve this urgently

    We're they in back or spine ?
  28. frozenborderline

    Cold sensitivity and its etiology--need to solve this urgently

    I was on it in the hospital and switched to dilaudid and oxy , fentanyl isn't isn't the best pain medication. It's somewhat serotonergic which makes it worse than other opioids but opioids in general are fairly safe and I don't think fentanyl is that dangerous
  29. frozenborderline

    Cold sensitivity and its etiology--need to solve this urgently

    Time to revisit this @rpapen77
  30. frozenborderline

    Epidemiology and Environmental factors in ME/CFS

    Included in what? I have seen studies showing rapid increase in IBS especially among children in past 30 years... even or especially in developed countries.