• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. K

    Strategies for not thinking about pain

    I ease my pain with epsom salt baths. I use 4 - 6 cups of epsom salts and 2 cups of baking soda, soak for at least 20 minutes, and then climb into bed. If I get at all active afterward it can undo the effect, and the pain kicks back in, but if I climb right into bed, my pain stays down.
  2. K

    Should i go to Mayo Clinic?

    The first year I was sick, I spoke to a physician who works at Mayo clinic who I was acquainted with socially. When he heard my symptoms he advised me to NOT got to Mayo clinic. My symptoms at that time were: chronic swollen glands, sore throat, extreme/atypical exhaustion, heaviness in my...
  3. K

    Disabled Imagination

    Hi Leela, I can relate to your thoughts on dreams and limitations, what is real and what is self-imposed. I feel like I am standing on a seesaw (figuratively), trying to maintain balance between hanging on to my dreams and visions for the future, and coming back into the moment and being with...
  4. K

    Dr. Komaroff say's CFIDS/ME is neurological.

    V99 Thanks for transcribing that quote. It's very encouraging to hear him speak on this, and give his opinion on the three non-replication studies.
  5. K

    Professor Simon Wessely & The Abused Child?

    ??????? This article seems biased towards the commission that evaluated the case, and displays familiar signs of bias against CFS, for example: "Those with the syndrome (CFS) like to call it myalgic encephalomyelitiis, a serious viral neurological illness. . . His parents discharged him...
  6. K

    What about ME?- documentary

    Ditto. This is so encouraging to see. :victory:
  7. K

    New Survey on CFS Risk Factors

    Gracenote, here are the questions from the CFIDS survey to assess "risk factors" for CFS: 1. Do you have chronic fatigue syndrome? Choose the answer that best fits your situation. 2. What is your gender? 3. What is your current age? 4. What is your date of birth? 5. What is your...
  8. K

    VIP Dx MAJOR ANNOUNCEMENT on Jun 1 !

    Oh I hope someone from the WPI is at the Grand Sierra Resort today, lunching with Michelle.
  9. K

    VIP Dx MAJOR ANNOUNCEMENT on Jun 1 !

    Sam, could you provide a link to this announcement? I can't find it on the VIP Dx site.
  10. K

    EVALUATING EMERGING INFECTIOUS DISEASES (EIDs) FOR TRANSFUSION SAFETY: TRANSCRIPTS

    "The doomsday scenario of course is the one that provokes a lot of concern that the virus causes a dread disease or diseases. That it has an extended incubation period, that it spreads rapidly by common routes, that it's already widespread. And perhaps there has been or there will be a viral...
  11. K

    What's going on in British Columbia, Canada for ME/ FM?

    No Kati, its not fair at all. Thanks for giving us a rundown on what's going on in B.C.
  12. K

    self actualization and CFS/ME

    The boon of this illness (and its not worth having the illness, I'd rather wizen and grow some other way) is the loss of everything fake. Status, superficial friendships, friends who only like who you could be for them, rather than liking you for who you are. None of that was really good for...
  13. K

    Article: Born to Run: NJCFSA Rocks New Jersey

    Yes, that's it. I suggested him as a possible interview subject for the film "What about ME?" but then couldn't find the video link to forward it on. Thanks _Kim_.
  14. K

    Article: Born to Run: NJCFSA Rocks New Jersey

    Speaking of NJCFSA, does anyone know why Ken Friedman's 2009 CFSAC testimony was pulled from youtube? His testimony was so powerful, and he risked losing his position to give that testimony. Does anyone know what happened to him?
  15. K

    Nevada News Makers interview with Annette and Dr. Donnica Available for Download

    None of the previous links worked for me, but I found it here: http://www.youtube.com/watch?v=xyQ3aqXX3gE&feature=related http://www.youtube.com/watch?v=ptDkjCWykso&feature=player_embedded
  16. K

    What about ME?- documentary

    I filled it out too. Thanks Frank. Where do we send pictures to? Btw, the trailer is excellent! Very exciting!
  17. K

    The term "Post Exertion Malaise" is also insulting.

    But advocate, that is exactly what happens to me. I overdo it just a bit, and suddenly I am overcome with the vapors and feel like I might swoon. :winking:
  18. K

    Kay Gilderdale on BBC Radio 2 from noon today Tues 11 May

    Thanks for sharing that Garcia. What a brave woman and wonderful mother, Kay Gilderdale. My heart goes out to her.
  19. K

    Comment by 'kit' in 'Grading Ampligen - A Mid Term Report Card'

    Thanks for this update. I hope your recovery continues. Please continue to keep us informed.
  20. K

    Watch CFSAC meeting online Monday 9-4 EST May 10

    I agree villagelife. Overall I think Wanda does an excellent job. She listens carefully, responds thoughtfully, and moderates well. I think she is a great asset to our cause, but that comment was careless. I wrote her a letter today letting her know this. She can be reached at: Wanda...
  21. K

    Watch CFSAC meeting online Monday 9-4 EST May 10

    Thanks for listing the attendees Jennie.
  22. K

    Plea from Dr Bell to donate to the WPI

    I'm in as well. I just got back from a doctor appointment and am reflecting on just how important this forum is to the welfare of those with CFS. My doctor asks *me* questions about CFS, he acknowledges what he does not know, he wants to know more about CFS, the information we have is not...
  23. K

    What are we waiting for really?

    Can we somehow take advantage of the current Sarah Myhill petition (1500 signatures, including personal stories in less than a week!) and bring these to the attention of our Senators, Reps, President, Vice President, and Prime Minister, tying in that specific issue with the broader issue that we...
  24. K

    Dr MyHill's License in Jeopardy

    I second that question. Thanks!
  25. K

    Dr MyHill's License in Jeopardy

    I've done this too.
  26. K

    Dr MyHill's License in Jeopardy

    Rock on Jane Bryant!
  27. K

    Dr MyHill's License in Jeopardy

    Sarah does know of him. I am positive of this. Craig is a statistician, did the numbers for her research and has been working with her. His name is on a paper published by her mito test research subjects having to do with the mito testing. I can't find it now, he sent it to me ages ago. I...
  28. K

    Dr MyHill's License in Jeopardy

    I posted my own outraged email to the GMC. Not quite so articulate, more like W T F? Arggh. I am so mad.
  29. K

    NEW! Cleveland Clinic Award for XMRV/CFS/Prostate

    I agree! :Retro smile::Retro smile::Retro smile::Retro smile::Retro smile::Retro smile::Retro smile::Retro smile: