• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. B

    Do you have scoliosis, double jointed, MVPS?Odd overlap- Connective Tissue Disorders?

    I was diagnosed with scoliosis age 8. I wore a back brace from age 9 to 16.
  2. B

    Comment by 'BRCforME.org' in 'In Fifteen Years'

    Well said Laurel.
  3. B

    Comment by 'BRCforME.org' in 'Do not even contemplate giving blood you would be no better than a murderer.'

    I'd also like to point out, that if it turns out that XMRV is a real threat to the blood supply, and ME/CFS patients did not do all they could to alert the public, that is when we the public will turn on us like a pack of wild dogs. Not Acting because of fear is doing more harm to our cause...
  4. B

    Comment by 'BRCforME.org' in 'Do not even contemplate giving blood you would be no better than a murderer.'

    The threat to the blood supply does not come from activists, it comes from governments unwilling to take precautionary measures to make it illegal for CFS patients to donate blood to in order to protect the blood supply. Do you think HIV/AIDS activists just sat around waiting for the...
  5. B

    CDC's Updated CDC/CFS Website: 21 July 2010 - CYA Plan for their desperate cover-up!

    Except that the WPI has already tied XMRV to CFS. It may be CCC CFS, but it's still CFS.
  6. B

    http://wikileaks.org/ WIKILEAKS FOR CFIDS/ME AND XMRV - AND THE CDC COVER-UP

    Mindy Kitei has the Irvine documents with Reeves telling her not to donate blood.
  7. B

    CDC's Updated CDC/CFS Website: 21 July 2010 - CYA Plan for their desperate cover-up!

    The CAA only appears to be interested in what is free. They seem to have no inclination to put the money and elbow grease into using PR to make the government move.
  8. B

    CDC's Updated CDC/CFS Website: 21 July 2010 - CYA Plan for their desperate cover-up!

    To beat the CDC, we need our own PR. Real PR.
  9. B

    CDC's Updated CDC/CFS Website: 21 July 2010 - CYA Plan for their desperate cover-up!

    The answer is our own PR machine. The CDC wins this fight because they can afford PR. Money should be going to biomedical research, yes, but it should also be going into real Public Relations. Newspaper an TV ads should have been running now concerning the link between XMRV and CFS. This fight...
  10. B

    It's time ME/CFS to have it's own PR Machine

    I think we should be doing more. We should be suspicious of the power of the CDC PR machine. I think a fund should be started to take out a full page ad in the Washington Post with a letter to t American Public from ME/CFS patients telling them that their government is supressing information...
  11. B

    another XMRV study in montreal

    Is he taking blood from further afield than Montreal?
  12. B

    Publish the FDA/NIH Papers: Email President Obama's Science Advisor, John Holdren

    Email the politicians and bureaucrats who can affect policy change, not the research-scientists. It's decision makers and policy makers we need to reach.
  13. B

    Publish the FDA/NIH Papers: Email President Obama's Science Advisor, John Holdren

    I've emailed the Globe and Mail, and every CBC station in the country.
  14. B

    BRCforME.org

  15. B

    Chronology of the NIH/FDA and CDC Paper Scandal

    June 22, 2010- Ortho releases a press release claiming that the FDA and NIH have independently confirmed in a soon to be published paper the WPI findings linking XMRV (a new retrovirus) to ME/CFS. http://www.mmdnewswire.com/xmrv-9040.html ORTHO contacted Dr. Harvey Alter today for a reaction...
  16. B

    Professor de Merleir treatment?

    If a patient is Canadian how do they get access to Ampligen?
  17. B

    CDC XMRV Retrovirology Study on CFS Published

    Simple, they're not real scientists.
  18. B

    CDC XMRV Retrovirology Study on CFS Published

    I think another question to ask is why CFIDS.org is making statements on behalf of Dr. Alter from the NIH, when the NIH has put out no such release (that I can find). The statement completely contradicts everything published previously, but CFIDS is a tertiary source. There's no electronic...
  19. B

    CDC XMRV Retrovirology Study on CFS Published

    Thank you!!!
  20. B

    CDC XMRV Retrovirology Study on CFS Published

    I'm not sure I have this right but this weeks issue of PNAS was published June 29th? http://www.pnas.org/content/current#ThisWeekinPNAS
  21. B

    FDA/NIH XMRV paper ON HOLD

    Anyone else wonder what the G8/G20 would have looked like if the NIH/FDA study had been published?
  22. B

    Wall Street Journal reports NIH and FDA find XMRV in CFS samples and CDC does not

    Too late for that. The original paper already made the CDC looked stupid.
  23. B

    Wall Street Journal reports NIH and FDA find XMRV in CFS samples and CDC does not

    What pisses me off is that they're being held up for publication.
  24. B

    VipDx testing for XMRV - in Canada

    Thanks Daffodil. I'll do that. :)
  25. B

    Urgent request for the cfids association of america solvecfs

    Can Canadians volunteer?
  26. B

    VipDx testing for XMRV - in Canada

    Thanks for the warm welcome. :) I've been lurking for a long time.
  27. B

    VipDx testing for XMRV - in Canada

    Hi. I'm Canadian. Diagnosed in 2001 by Dr. Anil Jain (contributor to Canadian Criteria). In the advent of the Science paper being replicated, I'd like to get tested. However, I find the language from Vipdx to be very confusing. Can any other Canadians who have been tested by VipDx please...