• 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. bluebird

    New study hints at biological roots of mental and physical problems in ME/CFS

    ph abnormality resonates here...for decades I have thought that the reason some meds/foods/supplements 'help', affect me positively, is their clearly off label effect of changing ph; antibiotics do this, hormones, foods...virtually everything has this potential; one doc actually told me...
  2. bluebird

    URGENT: ME/CFS Patient "A C T I ON" for Patients, Family and Friends

    On the bright side of being poor, unable to see the elite physicians who serve the elite ill, of losing 20 years of my life to suffering, disability...wait...there is no bright side. I did send the letter though. Will send everyday for a month. No problemo. Cat Se-'bilious' already auto-replied...
  3. bluebird

    Facing Christmas With the ME/CFS Community at Phoenix Rising

    When I was 4 yrs old ( 1954) I had to rest on the couch while my sisters ran around playing, decorating the tree. And yes, I felt left out, lonely. My mother and older sister worked hard to make me feel included. They still do. My adult daughters do, my soninlaw , his mother does. They are all...
  4. bluebird

    Psychology Eases CFS new research pub in NY times

    It made me cry. Ty for posting this, taniaaust1...I read it but was too sick to figure out the forums to post. Been a long time since I was here.
  5. bluebird

    NYT:" Psychotherapy Eases Chronic Fatigue, Study Finds"

    Ty, alex, for saying what I wanted to but could not; I am too sick...maybe I should get up and push through my limits... Ty dainty, for posting the Reuters version; not sure which is the worst of the two stories. I've been very very very sick lately, and I am growing more so. I am losing...
  6. bluebird

    NYT:" Psychotherapy Eases Chronic Fatigue, Study Finds"

    And I cannot comment as I feel. That would involve profanity.
  7. bluebird

    NYT:" Psychotherapy Eases Chronic Fatigue, Study Finds"

    I just read this at 7:00 pm http://www.nytimes.com/2011/02/18/health/research/18fatigue.html?_r=1&ref=global-home ( How can this be called breaking news? This is a giant leap backwards. I can't believe this is happening...totally freaked. )
  8. bluebird

    Article: Blood Products Advisory Committee Meeting Announcement (BPAC) December 14-15, 2010

    Registered yesterday. :victory: :thumbs up: :victory:
  9. bluebird

    Article: Lot of Questions at Int. XMRV WorkShop Q&A...and one BIG Answer?

    ~ no going back, now ~ :victory: :Sign Thanks: :victory:
  10. bluebird

    Phoenix Rising YouTube Video Thread

    From the bottom of my heart... From the bottom of my heart, thankyou. I wept. I've posted the video to my facebook. I've sent it by email as a forward to everyone I know. Thankyou to all who worked to create the video, contributed photos, music. Thankyou to Cort for the Phoenix Rising...
  11. bluebird

    Peptide T for XMRV

    Big Pharma? So, I have to wonder now, if the problem is actually Big Pharma. Wiill we have to fight THEM now? Who CAN fight them? Guess I am getting ahead of myself. But..well over eight years ago, the industry knew that this was useful to the HIV population. Who could possibly be taking...
  12. bluebird

    Article: Dr. Mikovits:Dr. Cheney XMRV talk (2/20/10) Part 1

    Ty Kim, Ty Cort...Ty to everyone. This is indeed encouraging. Hope is a good thing.
  13. bluebird

    Peptide T for XMRV

    thanks, julius you saved me a lot of trouble by posting the link above Biological Activity Chemokine receptor 5 (CCR5) antagonist. Acts as a selective antiviral entry inhibitor for R5 tropic HIV-1 strains. Blocks CCR5-mediated monocyte chemotaxis and reduces microglia and astrocyte...
  14. bluebird

    Free Mikovits web talk from Cheney Clinic/Wednesday Feb. 10th! 1:00 EST

    http://www.cheneyresearch.com/live It is free to listen. Free Live Web Broadcast : XMRV and CFS Q&A Session Paul Cheney PhD and Judy Mikovits PhD, via speaker phone, will be holding a live web broadcast to answer your questions on XMRV and CFS. This broadcast is open to anyone...
  15. bluebird

    Free Mikovits web talk from Cheney Clinic/Wednesday Feb. 10th! 1:00 EST

    I am crazy for Cheney. Sign up for his newsletter here: http://www.cheneyresearch.com/ Topic: XMRV and CFS Q&A Date: February 20, 2010 Time: 2:00 PM EST to until... Where? Here: http://www.cheneyresearch.com/live
  16. bluebird

    Unlimited Friendliness

    Thankyou, Koan. I am a practicing Buddhist. But I emphasize the word 'practicing'. Some days are very difficult for me lately. Thankyou for this post. I really needed re-minding. ॐ Compassion for ourselves is where love begins. What a great Valentine's Day post! ♥
  17. bluebird

    Dr. Reeves Removed from the CDC's CFS Research Program

    "On Feb. 14, Dr. Reeves will begin an assignment as Senior Advisor for Mental Health Surveillance in the Public Health Surveillance Program Office within the CDC's Office of Surveillance, Epidemiology, and Laboratory Services." I am glad for the potential for change that this may signal, but...
  18. bluebird

    Reeves is out/What about the CDC/CFS website?

    I would like to say that I suspend judgement about this change from Reeves to Unger, but I do not. Unger will have to prove herself to me. Til then, I remain skeptical. Perhaps this is how I protect myself, not trusting anyone. I do hope that one day, we can all trust the people who were...
  19. bluebird

    Dementia in ME/CFS

    I am much worse these days ( ie in Agony with a capital 'A', BRAINDEAD, dysautonomia, bedridden 2/3rds of the time, highcentered) after 18 years of acute CFIDS. This is subsequent to a lifetime of a push/crash sydrome beginning when I was four in 1954 when I was treated aggressively for strep...
  20. bluebird

    Student Project: Medical Questionnaire, Volunteers are STILL Needed

    That comment is exactly why I will not participate in the questionnaire. If this disease were that simple, we would all be well by now. That is like telling a end stage pancreatic cancer patient that you had a malignant mole removed when you were a teen, are now cancer free and that if you can...
  21. bluebird

    Most Abrupt Treatment Turnaround - Dr Cheney

    Cheney was the first CFIDS doc I discovered and whose work I have followed since 1993. And while I am not his patient, I do believe he is one of the brighter people we have working for us. I know that I cannot take Omega 3's, nor CoQ10, nor that megaexpensive whey powder that I have sitting in...
  22. bluebird

    Fatigue Management Institute Launches National Fatigue Survey

    Ty for posting the link to the survey. I just looked at it. I cannot for the life of me see how my religion or income or frame of mind has anything to do with me being ill. I was...more than irritated by the questions on the first page. And the photo by Dorthea Lange? The Great Depression? I...
  23. bluebird

    Fatigue Management Institute Launches National Fatigue Survey

    I will not be participating in this survey. I do not see what has been characterized as fatigue in M.E./XAND as such. Temporary paralysis and/or dysautonomia are not fatigue. Consequently, I believe that 'managing fatigue' surveys are irrelevant to the disease I suffer.
  24. bluebird

    Student Project: Medical Questionnaire, Volunteers are STILL Needed

    That cracked me up, Alesh. Sorry, linzi I have to pass on any survey per CFIDS/ME/WTEver particularly when I do not know who designed the study, who sponsors it, to what purposes it will be applied, and what is in it for me. I need to know who FUNDS the research. I need names of all...
  25. bluebird

    Pivotal ME/CFS Study Desperate for Healthy Controls

    I had a spinal for anesthesia in childbirth. The pain was nothing compared to having a baby without anything at all ( done that, as well) , or compared to the excruciating pain I've lived with every day of my life since 1993. I would consider it well worth the transient pain of a spinal tap...
  26. bluebird

    Pivotal ME/CFS Study Desperate for Healthy Controls

    I would have a spinal tap in a heartbeat. But when I said I wanted one, my doctor laughed out loud and made fun of, and deliberately humiliated me. When I said I am pretty sure I have a mitochondrial defect, he laughed like a maniac and was alternately patronizing and sarcastic. When I...
  27. bluebird

    CBT/GET potentially harmful to ME/CFS patients

    Kudos to all who stood their ground and supported their positions with FACTS. You do for me that which I can no longer do. Well done, parvo. Thankyou.
  28. bluebird

    CBT/GET potentially harmful to ME/CFS patients

    Pace 'Pace' is a brand of picante sauce. :p
  29. bluebird

    Medicare Part D and anti-retrovirals

    I am not very bright but it seems to me that choosing an insurance plan to cover 'drug unknown' for 'results and response plan also yet unknown' is just luck of the draw at this point. Maybe I am just a pessimist. I WANT to believe, only I don't know what to believe IN just yet. Please...
  30. bluebird

    Substitutes for grains

    http://www.quinoa-recipes.com/Quinoa_Pages/What_Is_Quinoa.html I like quinoa in my customized versions of tabbouleh. Don't ask. I eat a lot of things no one else would eat, lol.