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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. Neunistiva

    Whitney Dafoe's 38th Birthday Fundraiser for Ronald W. Davis's research

    Sorry, I'm obviously completely incapable of understanding anything since I became very severe. Sorry for wasting your time, I hope I haven't upset you, my lack of understanding must have been so annoying. I'll just keep my mouth shut.
  2. Neunistiva

    Whitney Dafoe's 38th Birthday Fundraiser for Ronald W. Davis's research

    If I remember correctly funding was cut to the lab when they switched to studying ME/CFS. Anyone who knows anything about history of mistreatment of ME/CFS won't be surprised by that. As for why they don't use Stanford's microscopes I am also guessing that the intense work they are doing...
  3. Neunistiva

    Whitney Dafoe's 38th Birthday Fundraiser for Ronald W. Davis's research

  4. Neunistiva

    Whitney Dafoe's 38th Birthday Fundraiser for Ronald W. Davis's research

    That's great news but OMF is funding 6 research centers. I'm not sure how it works but we don't know what they've earmarked those funds for. I don't think any lab can just take money as they wish. I mean, they knew OMF'd be getting around that amount this time of year, and still they...
  5. Neunistiva

    Whitney Dafoe's 38th Birthday Fundraiser for Ronald W. Davis's research

    Ooooooor, when ME/CFS researchers who (unlike people who research other diseases and have the luxury to focus only on their job) have to juggle research with fighting for recognition, fighting prejudices, dealing with grant proposals getting rejected for ridiculous reasons, their careers being...
  6. Neunistiva

    Whitney Dafoe's 38th Birthday Fundraiser for Ronald W. Davis's research

    I don't understand how you know they're not already doing that. And if it were a good solution why do you think among a group of highly intelligent experts none have thought of that but you did? I know our faith in the system has been shattered but seriously this is going too far. We are...
  7. Neunistiva

    Whitney Dafoe's 38th Birthday Fundraiser for Ronald W. Davis's research

    Bumping this thread up as we're only halfway there.
  8. Neunistiva

    Hypokalemia

    Yeah, severe hypokalemia has many symptoms, including death, but luckily I caught it before it became severe and with prescription supplements I'm only mildly hypokalemic. At least, my plasma levels are low, who knows, my cells might have normal levels... I never suffered from paralysis.
  9. Neunistiva

    Hypokalemia

    I had aldosterone/renin ratio test and it was normal. Normal CBC, normal levels of B12 and serum homocysteine.
  10. Neunistiva

    Hypokalemia

    I too have constantly low potassium for years, even while supplementing with prescription potassium powder. I am not on any medication that should be able to reduce potassium. On the contrary, I am taking beta-blockers which should increase potassium levels. My magnesium serum and urine level...
  11. Neunistiva

    Coronavirus Vaccine(s)

    Who? I never heard a single person say or post that. News from European Union Relatively soon we will have additional experiences from EU reporting system.
  12. Neunistiva

    Coronavirus Vaccine(s)

    CDC reports 272,001 doses of vaccine have been administered in the United States. That brings the world up to 783,910 doses (data for other countries is 4 days old).
  13. Neunistiva

    Coronavirus Vaccine(s)

    World has reached almost 300,000 doses of COVID-19 vaccine administered as of December 16. Still no data for the US. https://ourworldindata.org/grapher/cumulative-covid-vaccinations?tab=chart&stackMode=absolute&time=earliest..latest&region=World
  14. Neunistiva

    Coronavirus Vaccine(s)

    1. Your link says "anaphylaxis following vaccines is rare, occurring at a rate of approximately one per million doses for many vaccines." Many. Not all. 2. That still doesn't say what should be. It will be what it is, and then they will decide if it's acceptable risk. 3. So far it looks...
  15. Neunistiva

    Coronavirus Vaccine(s)

    No, it's not correct. 1. Vaccine has been administered in the UK for 10 days, with 2 cases in those 10 days. 2. There are no statistics about what number of allergic reactions there "should" be. 3.You are comparing apples and oranges. COVID-19 vaccine is administered to specific groups of...
  16. Neunistiva

    Coronavirus Vaccine(s)

    No, 2 cases in UK and both of those people had previous history of anaphylaxis and carried epinephrine with them.
  17. Neunistiva

    Coronavirus Vaccine(s)

    You talked to people who developed ME/CFS after getting a vaccine. Without research we can't know if the two are connected. I didn't say it was superstition, I was explaining how human brain works, and why we can't trust it to find the cause. That's why we developed the scientific method, and...
  18. Neunistiva

    Coronavirus Vaccine(s)

    PEG (polyethylene glycol) is a common ingredient in skin creams, toothpastes and is even used as a laxative. Due to frequent exposure to it people will develop antibodies to it. Because of this very small percentage will then have an allergic reaction to it, and even smaller percentage of those...
  19. Neunistiva

    Coronavirus Vaccine(s)

    I would just like to point out that we don't know for sure what their trigger was. All we know is the sequence of events, and just because something preceeded coming down with ME/CFS does not mean it caused it. Look at any superstition and you will see how human brain loves to make any...
  20. Neunistiva

    Coronavirus Vaccine(s)

    I have severe ME/CFS and never had any issues with vaccines so I am most likely going to take it as soon as it becomes available to me. I had hepatitis B vaccine (and many others) and didn't develop ME/CFS from it, nor had any other reactions. I got ME/CFS many years later, so despite obviously...
  21. Neunistiva

    Cortene Peptide for MECFS? "Curative"?!

    If this was true improvement, and not just placebo effect or some artefact, I wholeheartedly agree I would gladly take it. I am completely bedridden and completely dependent on the help of my parents. 26% improvement would mean I would be able to go to the bathroom on my own or get a glass of...
  22. Neunistiva

    How old were you when you got sick

    It would also be interesting to see the average age of users of this forum. If a certain age group is more likely to be a member of the forum that could skew the results.
  23. Neunistiva

    benzodiazepines

    It's always good for your doctor to confirm you are ready to get off your medication and to be informed in case something goes wrong, but as for the tapering schedule itself the problem is that most doctors think you can taper off in a matter of 3 weeks. As long as it's not life threatening...
  24. Neunistiva

    Could Copaxone Help Us?

    Has it been announced already or did I miss it?
  25. Neunistiva

    CCI SURVEY – for all ME/CFS patients tested for CCI and related conditions (please answer whether tested positive or negative)

    Just a reminder - if you are IgG positive that does not mean you have chronic active Epstein-Barr infection. Even if titers are high. It just means you came in contact with the virus in the past and your body created immunity against it. 90% of adult humans are EBV IgG positive. Chronic active...
  26. Neunistiva

    How much longer

    I remember the nanoneedle and FDA approved drugs to be tested being talked about in 2017. Nanoneedle first needs to be adapted to gave higher throughput because for drugs different combinations and different doses need to be tested, so I think it's a lot slower than just measuring impedance in...
  27. Neunistiva

    IIME 14th International ME Conference, May 31, 2019 London

    These accounts seem to be tweeting https://twitter.com/kay_hallsworth https://twitter.com/karenphysiocouk https://twitter.com/courtney_37 If I understand correctly videos will be uploaded later and available for free viewing
  28. Neunistiva

    Ron Davis Research Update

    I think that was just Dr. Davis' way of saying they are doing proper science and being careful. You don't get a hypothesis you like and then set out to prove that it's correct because you'll get blinded by biases. (PACE trial, cough) Doing your best to poke holes in your own hypothesis and...
  29. Neunistiva

    2 weeks of constant adrenaline surges

    How do you know they are adrenaline surges? Is there some test for this? I am asking because I get very similar symptoms, but for me they are due to POTS and dysautonomia and have nothing to do with adrenaline. I get feeling of skipped heart beats (PVCs), random very fast heart rate, tingling...
  30. Neunistiva

    A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

    I have posted it on reddit