• 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. S

    In Memory of Dr. A. Martin Lerner

    How do I contact you for assistance? I tried to message you back in November. Thank you!
  2. S

    Any doctors treating using cidofovir in Michigan?

    RugbyGoat , a pm has been sent to you.
  3. S

    Dr Lerner Has Cancer.

    If anyone knows of any patients of Dr. Lerner who may not have heard about the new group, please let them know!
  4. S

    Are you a Patient of Dr. Lerner?

    Thank you, moderators, for putting this under the proper topic!
  5. S

    Are you a Patient of Dr. Lerner?

    A private Yahoo Group has been set up for patients of Dr. Lerner Would you like to connect with other patients of Dr. Lerner? Several patients of Dr. Lerner are organizing a virtual support group for patients to connect and share This group will be private and only include current patients...
  6. S

    Dr Lerner Has Cancer.

    A private Yahoo Group has been set up for patients of Dr. Lerner Would you like to connect with other patients of Dr. Lerner? Several patients of Dr. Lerner are organizing a virtual support group for patients to connect and share This group will be private and only include current patients...
  7. S

    Article: Researcher Confesses, Implicates Dr. Mikovits in Theft of Materials From WPI

    According to exhibit 3, these were to be sent to Ruscetti prior to the firing.
  8. S

    Judy Mikovits has been arrested

    According to her attorney, she left the state long before the lawsuit and injunction.
  9. S

    Opposition to the Coalition 4 ME/CFS Proposal

    Maybe the U.S. got it right this time?
  10. S

    Opposition to the Coalition 4 ME/CFS Proposal

    It's been rolling out for years, Jill. http://www.afairname.org/ Fortunately, many of the advocates who supported this appear to have bowed out. Even Peterson wants to go back to the future by using CFIDS.
  11. S

    Opposition to the Coalition 4 ME/CFS Proposal

    The ME-ICC calls for dropping CFS all together and using only M.E. and the ME-ICC. Emphasis on "When properly defined." What guarantee do I have that this will be properly defined? You go in there with CFS and HOPE that the ICC or CCC will be used? My Dr. will have no problem Dxing me with...
  12. S

    Opposition to the Coalition 4 ME/CFS Proposal

    My concern is that they (the government) will apply the Empiric definition although Fukuda is not much better. Thereby connecting M.E. to the Empiric CFS. I can't see them using the International (M.E) or even Canadian criteria. I may have missed it, but I see nothing about any definition...
  13. S

    Opposition to the Coalition 4 ME/CFS Proposal

    What definition of CFS will be used?
  14. S

    UPDATE: BLOOD WORKING GROUP

    So, if negative, is Cort gloating when he says "big news?" Big news for most patients here would be a positive BWG result. A negative result would be nothing new. I would hope Cort is responsible enough not to gloat. Or is it a simple case of "I know something you don't know?"
  15. S

    Bob & Courtney Miller question President Obama on CFS research/ Reno Town Hall today!

    We ALL need to follow up!!! See http://www.rescindinc.org for details.
  16. S

    Bob & Courtney Miller question President Obama on CFS research/ Reno Town Hall today!

    Yeah, great idea! http://forums.phoenixrising.me/showthread.php?10399-quot-10-Letters-quot-RESCIND-s-May-12th-Campaign
  17. S

    "10 Letters" RESCIND's May 12th Campaign

    10 Letters Update With just a few weeks to go, here are some updated suggestions: Is it okay for patients outside the U.S. to participate? Why not? Let's show him just what a global catastrophe this is! Additional groups he should contact for information: The IACFSME People...
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    "10 Letters" RESCIND's May 12th Campaign

    I saw this on Co-Cure but haven't seen it here yet: Post Far and Wide! On the cusp of the nineteen year anniversary of May 12th Awareness Day, RESCIND is proposing the "10 Letters Campaign" for May 12, 2011. Fellow PWMEs and those who stand with us, I've been lobbying my...
  19. S

    My AZT + RAL Trial

    /threadjack/ Could you please direct me to this breast cancer and XMRV study? TY! /threadjack over/
  20. S

    BEST of 2009: the Professionals

    For Fresh Eyes http://aboutmecfs.org/Int/IntHennesseyCFS.aspx
  21. S

    BEST of 2009: the Professionals

    Advocates of the last two decades. Why don't I see any mention of RESCIND, Tom and Jerry? RESCIND has done more for awareness worldwide than anyone by creating May 12 Awareness Day, Lobby Days and reading patients' testimony before the government when patients were to ill to attend. Just to...
  22. S

    Kim McCleary: Open letter to CFS community

    The online supporting materials are available here by clicking on "Supporting Online Material" on the left side of the page under Article Views: http://www.sciencemag.org/cgi/content/abstract/1179052?ijkey=m3wzKT4yJqEyk&keytype=ref&siteid=sci The link downloads an 18 page pdf file...
  23. S

    Time for the Big Talk. How's the CAA doing?

    Read my post again, Cort. You just made my point for me. You said the CAA and Kenny was the first group to call for Reeve's head. However, the study, as you pointed out, dates back to starting in 2000. There were other patient orgs and advocates calling for his head long before that.
  24. S

    Time for the Big Talk. How's the CAA doing?

    So Kim McCleary and the CAA is supposedly the first to call for Reeve's head but today an article is posted to Co-Cure that she co-authored with Reeves... Continuing Medical Education Challenges in Chronic Fatigue Syndrome. Journal: BMC Med Educ. 2009 Dec 2;9(1):70. [Epub ahead of print...
  25. S

    Dr oz preview - "simple stretching for xmrv"

    John Stossel (sp) is no longer with 20/20 so I don't think there's any worry about hysteria. :D Tim Johnson did a good peice on ABC News: http://abcnews.go.com/video/playerIndex?id=8787363
  26. S

    Dr oz preview - "simple stretching for xmrv"

    Next Target... Our next target should be someone like Tim Johnson on 20/20 or Nightline.
  27. S

    Group Letter for Dr Donnica re Oz show

    Hello Dr. Donnica, Please review this particular journal article, as it discusses the causes of death of those with CFS: http://www.prohealth.com/library/showarticle.cfm?id=8197&t=CFIDS_FM Journal: Health Care for Women International. 2006 Aug;27(7):615-26 Authors and...
  28. S

    Group Letter for Dr Donnica re Oz show

    Or this, found at: http://www.ahummingbirdsguide.com/whatisme.htm In the 1980s Mark Loveless, an infectious disease specialist and head of the AIDS and M.E. Clinic at Oregon Health Sciences University, found that M.E. patients whom he saw had far lower scores on the Karnofsky performance...
  29. S

    Group Letter for Dr Donnica re Oz show

    How about this, recently sent to Co Cure by RESCIND: Dr. Marc Loveless as quoted by Tom Hennessy from A Brief History of the Name Change Movement http://www.rescindinc.org/history.htm Dr. Shelekov looked puzzled and maybe a little skeptical. But Dr. Marc Loveless, sitting next time to...
  30. S

    CCFS Advisory Committee Meeting - Will be Webcast Live

    The meeting will be archived and viewable at the NIH site. http://videocast.nih.gov/PastEvents.asp It looks like they are quick to post the archives. Please, rather than watching from youtube or listening to these mp3 files, view the official videos from the NIH site, so your views will...