• 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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  1. priya

    "Unrest" Documentary Reviews

    thank you! oh Leela, how are you? these forums are hard for me + I know FB is harder you, but our OG is there and we do miss you. and ppl often wonder where you went. well I seem dippy atm, but my biggest news is: 1. I sat up in hospital bed, then eventually stood, then eventually took steps...
  2. priya

    "Unrest" Documentary Reviews

    also representing the most severe with the least social supports in my review. Jen now calls herself "moderate", not "severe". 7000 characters. imbd accepts 5,000 for a review in case anyone is wondering. https://www.amazon.com/review/R3HBLKLSIGPKQH/ref=pe_1098610_137716200_cm_rv_eml_rv0_rv
  3. priya

    Do we know who Jennifer Brea's doctor is?

    hi all, not able to be on forums much. wanted to chime in that Jen was using Valcyte. she may have changed it to another anti-viral more recently. this is the one she was taking when she started walking more in her house, I'm 99% sure.
  4. priya

    Poll: Suicide - as many as one in five CFS patients kill themselves

    i think the Q: 'Have you ever considered suicide FOR RELIEF FROM your ME or CFS symptoms?' only provides one piece of the puzzle. i'm bed-ridden 100% for 12.5 years, cannot be lifted, put in a wheel-chair, etc. BUT if i were to contemplate ending my life it would be because i have petitioned...
  5. priya

    Methylation Startup - Refeeding Syndrome

    it's true. i was also in the ED over xmas + apparently have electrolytes out of whack along with a critically low level of phosphate [also present in various myopathies].yet, i don't starve myself + must eat ev 4 hours to maintain BS levels. it seems the common denominator in refeeding syndrome...
  6. priya

    got infection. which Abx is safest?

    hi all, i always treat w/ herbs, but i got this infection in an old ear piercing that's really affecting me. i'm putting diluted food-grade H2O2 on it, but i feel the infection spreading to my eardrum and down my neck. i feel quite ill and am having probs using fingers/hands and my brain (i'm...
  7. priya

    Is Yasko's Nutrigenomics Panel enough?

    i've been doing yasko protocol for 11 months now. i have 17 of the 30 mutations that she tests for, and from my NA/K imalance, likely an ACE deletion, too.... i have tried for years to work on the gut in a big way, but couldn't manage the detox until my methylation was working better. every...
  8. priya

    ME/CFS: Dedicated Care Unit in Toronto Hospital Needed, petition on Change.org

    thanks for sharing my petition here, ggingues, and to enid sparrow and justinreilly for signing it. the initiative will be brought up at the next NDP caucus meeting on tuesday april 3, 2012 to see if they will support it. the ME/FM Action Network of Canada, and the MEAO of Ontario are taking...
  9. priya

    Dedicated Care for ME/CFS Needed for Toronto Hospital: In Memory of Emily

    Emily Collingridge's death was deeply saddening - and the last straw for me regarding hospital care. Though details of her death have not been released, she mentioned to me that she had a severe relapse after her previous hospital admission. People with severe ME/CFS often opt to refuse...
  10. priya

    Dedicated Care for ME/CFS Needed for Toronto Hospital: In Memory of Emily

    Emily Collingridge's death was deeply saddening - and the last straw for me regarding hospital care. Though details of her death have not been released, she mentioned to me that she had a severe relapse after her previous hospital admission. People with severe ME/CFS often opt to refuse...
  11. priya

    Is it worth explaining the difference between ME and CFS to the public??

    nomenclature of ME and CFS if you live in canada and are diagnosed w/ CFS, then you have ME. canada follows the WHO's ICD-10 without clinical modifications, meaning they both fall under G93.3 (a category for neurological illnesses). the canadian criteria diagnose 'ME/CFS'. in the US...
  12. priya

    Article: SIX Advertisement Samples for the Washington Post - Review & Comment by 31 O

    i can view ads, but not vote for them (i'm using safari).
  13. priya

    BodyTalk Balance Your Cortices in 1 minute

    body talk is potent stuff, working on all dimensions of the being. please be careful with it! i had the top bodytalker in canada do some sessions for me while hospitalized. i felt horrible after, like i was psychotic... later i had the inventor of the technique himself come to my bedside at...
  14. priya

    Article: Non-Facebook Users - Vote for PANDORA

    thanks lynn! i emphasize that there are only 3 more days to vote (ends july 13). ask all facebook friends to vote, too. together we can accomplish a lot! only about 1,100 votes for PANDORA so far; pretty low considering our numbers of afflicted and that people world wide can vote. let's get to it!
  15. priya

    Article: An MD on the Lightning Process

    If the LP works for some people, great! My issue with it is that it is only available to those who can withstand it's rigors. I used to be paralyzed, unable to speak or tolerate any sense perception. I'm now better, still 100% bedridden for years and can't cope with an 8 hr. visit from an LP...
  16. priya

    Master Sha Soul Mind Body Healing

    I'm interested in hearing about anyone who has tried this, chanting consistently as the work requires. It's quite controversial, mostly due to the expense and the entirely new system of being that it requires;ie- to unsquare our heads and just do the practices. I've been doing this for 3 years...
  17. priya

    Tulsi TeaSacred Basil/BE CAREFUL OF IT!!!!

    tulsi tea should be 'occimum sanctum'- holy basil; i've not heard of the 3 varieties. perharps your lot was contaminated or contained herbs other than holy basil. considering a lot of it comes from india, i'd not be surprised if you got a lot more ( of something) than you bargained for.