• 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. KauaiWahine

    Migraine medication that works like a miracle 🥳

    Oh, yes - there’s no way I’d be able to take any medication or do any treatments if my insurance didn’t cover it! *sigh* Medicare For All really needs to happen in this country.
  2. KauaiWahine

    Poll: Did you get correctly diagnosed with a mental illness before you were diagnosed with ME/CFS?

    I have Chronic PTSD and was diagnosed a few years prior to my ME diagnosis (though I’d been suffering from both for MANY years before I was diagnosed with either)
  3. KauaiWahine

    Migraine medication that works like a miracle 🥳

    Ok I’ve never taken a medication that worked like a miracle before, so my experience with this new migraine pill that just came out this spring was unexpected, and must be shared with other migraine sufferers on here: it’s called Nurtec. Has anyone else tried it yet...
  4. KauaiWahine

    "Disinsection" or How Our Govts Are Spraying Airline Passengers With Insecticides

    Here's an article written in the late 90s (when "journalists" did more than compile links to other people's articles and opinions on Twitter) on the topic of pesticides on planes: http://motherjones.com/politics/1998/07/danger-air Scarily (but not surprisingly to those of us with M.E.) nothing...
  5. KauaiWahine

    "Disinsection" or How Our Govts Are Spraying Airline Passengers With Insecticides

    I just came across this piece written by the maker of the "Vanishing Bees" documentary - it has lots of good specifics and links for those well enough to read them all: http://www.truth-out.org/opinion/item/31402-pesticides-on-planes-how-airlines-are-softly-killing-us Also, if you think that...
  6. KauaiWahine

    "Disinsection" or How Our Govts Are Spraying Airline Passengers With Insecticides

    I guess my overall point is, there have historically been *so many* times when the scientific community said something was "safe" only to find out later that it's not. Especially when it comes to man-manipulated compounds. So when they say these pesticides are "safe" (but still include a...
  7. KauaiWahine

    "Disinsection" or How Our Govts Are Spraying Airline Passengers With Insecticides

    @Sean Aside from the fact that people travel all the time on airplanes with their beloved cats and probably don't know this(!) there apparently have been more recent studies showing the cumulative effects of exposure aren't so benign for humans: http://www.ncbi.nlm.nih.gov/pubmed/25630971...
  8. KauaiWahine

    "Disinsection" or How Our Govts Are Spraying Airline Passengers With Insecticides

    btw, @viggster - I sent a tweet about this to you and @Rose49 (perhaps Ron can point someone appropriate in this direction of inquiry?) but the link to the study @Hip included above is very interesting (though sadly I no longer have the ability to digest more than a few paragraphs) -...
  9. KauaiWahine

    "Disinsection" or How Our Govts Are Spraying Airline Passengers With Insecticides

    @Hip yes, we'd need to find out what Insecticides they're actually using, etc (why I said someone needs to investigate this) because at this point we have no idea. There are actually YouTube videos of flight attendants walking through the cabin spraying an aerosol can while passengers are on...
  10. KauaiWahine

    "Disinsection" or How Our Govts Are Spraying Airline Passengers With Insecticides

    Definitely. I also have Endometriosis, among other things, which is another under-researched, misunderstood condition that likely has immunological implications but the medical establishment won't acknowledge that. To be clear, I'm not implying that this is THE cause, just that with such a...
  11. KauaiWahine

    "Disinsection" or How Our Govts Are Spraying Airline Passengers With Insecticides

    Yeah, I knew about that part of the equation, but to find out they are INTENTIONALLY FUMIGATING US without our knowledge or consent (or the ability to even crack open a window while we're literally trapped for hours at a time), potentially for decades is just... I don't even have the word for...
  12. KauaiWahine

    "Disinsection" or How Our Govts Are Spraying Airline Passengers With Insecticides

    I think it would be interesting to study how many of us were frequent flyers (esp overseas) in our previously healthy lives... Or if the onset followed a flight. Personally, mine was gradual onset but I have a documented and definite pattern of getting fevers and having my condition get...
  13. KauaiWahine

    "Disinsection" or How Our Govts Are Spraying Airline Passengers With Insecticides

    The point isn't that it's "news" in the traditional sense but that it's news to most people who have never known they were being exposed to this for who knows how long. Even just today, with links provided to the US gov website clearly stating this "Disinsection" policy, people are arguing...
  14. KauaiWahine

    "Disinsection" or How Our Govts Are Spraying Airline Passengers With Insecticides

    They list the countries with specific requirements in the link I posted (many of which I've traveled to) but that doesn't mean (esp with this Zika scare) other companies/routes aren't doing it... If you notice, the W.H.O. report citing that it's "safe" is from the mid-90s!! (myriad implications...
  15. KauaiWahine

    "Disinsection" or How Our Govts Are Spraying Airline Passengers With Insecticides

    This sounded like a conspiracy theory in the blog where I first saw it... That was until I read on the official DoT website the actual policy and this made up word to obfuscate what they're actually doing to people without our consent: hot-boxing passengers with aerosol INSECTICIDES...
  16. KauaiWahine

    Help needed to get a hospital bed...

    Mahalo!!! :)
  17. KauaiWahine

    Help needed to get a hospital bed...

    Aww, thank you for taking the time to watch it and comment :hug:
  18. KauaiWahine

    Help needed to get a hospital bed...

    Aloha - I'm not sure if this is the right place to post this but if you could please help and share this link/fundraiser for an adjustable hospital bed it would be greatly appreciated! https://www.youcaring.com/Donia-Lilly-Myalgic-Encephalomyelitis Mahalo nui :heart:
  19. KauaiWahine

    Why do I tell the truth?

    Sadly, women in pain are taken less seriously, especially when it comes to gynecological pain (I have endometriosis - another "mysterious" condition that affects 1 in 10 women yet goes undiagnosed for an average of 12 years because "period pain is normal"). This poor woman had and ovarian...
  20. KauaiWahine

    Question for former athletes/fitness rats

    Interestingly I came across something yesterday while I was looking into the anaerobic threshold & lactic acidosis problems of people with me/cfs... this website has a lot of interesting info (the doc is in Wales for anyone who lives nearby, but I'm guessing a lot of you already know about her...
  21. KauaiWahine

    Question for former athletes/fitness rats

    Huh. I never thought about this in relation to mitochondrial disfunction. Ever since primary school I was a top sprinter in running and swimming but no matter how long the season was nor how much we trained I could never do long distance anything. I'd throw up afterward if I was forced to. Even...
  22. KauaiWahine

    Trudie Chalder to speak at Norwegian Research Seminar

    :rofl: Thanks for starting my day with a smile, that was great :lol:
  23. KauaiWahine

    A qualitative investigation of eating difficulties in adolescents with cfs/meA qualitative investiga

    Ugh. Seriously. I don't even know how many times I've heard people flat out say that "gluten allergies are just a fad" (I have a gluten allergy, confirmed with tests) and I even heard someone say "If someone dropped their kid off at my kid's party with a list of allergies, I'd make sure to give...
  24. KauaiWahine

    Best pain cream EVER

    I've tried all kinds of topical pain relief over the years (even massage doesn't help without it when I'm in so much pain) and the best one I've found is called Pain Wizard. You have to buy it from their site unless you live in one of the few places that sells it retail... It's full of all...
  25. KauaiWahine

    If you had a few spare bucks, what would you buy to ease your condition?

    I often fantasize about getting 2 things: A bathtub large enough so I can lay down completely flat - I'd fill it with just enough warm water and Epsom Salts so that I could float weightlessly without having pressure on any part of my body. (I have a weird bathroom that's big enough to do this...
  26. KauaiWahine

    A qualitative investigation of eating difficulties in adolescents with cfs/meA qualitative investiga

    I haven't heard about this before... Can you easily explain the connection or point me to where I can read about it? (I'm guessing this might have a lot to do with my eating difficulties/avoidance. And feeling hungry and nauseated at the same time is awful!)
  27. KauaiWahine

    Transcript of Dr. Vicky Whittemore's ME/CFS proposal to the NIH Council, 26 May 2016

    I don't know anything about how this stuff works, but if their research focus is completely different (mitochondrial vs viral) why couldn't they both have a center? (my guess is they might find they're researching related but distinct diseases, given the stark differences in patient outcomes...
  28. KauaiWahine

    Ron Davis at San Francisco rally: very close to a biomarker, looks like a mitochondrial problem

    Yes, especially upsetting to me as they've had that evidence for as long as I've been alive & if they had done something, anything with it i (and many others) may never have fallen ill!! (And I certainly wouldn't have degenerated to the point I am now if anyone had told me not to push myself as...
  29. KauaiWahine

    Money

    If you're in the US, the site PureFormulas often has better prices than iHerb or Vitacost depending on what exactly you're buying (as a self-employed artist, I've always been an avid comparison shopper). As for the tip on buying in bulk from China, my concern wouldn't just be buying something...
  30. KauaiWahine

    "I couldn't get out of bed for eight months - now I'm a burlesque stripper"

    @worldbackwards I fantasized about becoming a cyborg for years... This dream was shattered when I read "Why isn't my brain working? A revolutionary understanding of brain decline and effective strategies to recover your brain's health" by Datis Kharrazian - I discovered that (depressingly, yet...