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    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. Jerry S

    Problems with International Consensus Criteria

    This was my comment on Facebook to Cort Johnson's unfair and underhanded attack on the CCC and ICC: Cort Johnson fails to represent the Jason study's findings accurately. Jason's group found a higher rate of psychiatric *co-morbidity* using the CCC and ICC. For Johnson to say these are...
  2. Jerry S

    FDA/NIH Paper will be published

    I think there was an undue burden placed on the WPI paper (It's good now that they met it.) and the Alter paper. The CDC's flawed piece of junk sailed through.
  3. Jerry S

    xmrv action site

    Excellent idea, Judder! I'll be there. Thanks for your seemingly tireless work for us all.
  4. Jerry S

    FDA/NIH Paper will be published

    Originally Posted by taniaaust1: I think the fact that the CDC, not only sought to obscure the use of Reeves' empirical definition in the Switzer paper, but claimed they used 1994 Fukuda on its XMRV website, points to quite purposeful intent. The paper says they used the "revised 1994...
  5. Jerry S

    CDC's History with ME/CFS - 1996 PrimeTime Report

    A big thank you, ixchelkali! I had no idea this 1996 Prime Time Report existed. I thought they did a good job of covering the story. It's a useful piece of evidence. Why can't we get coverage like this today? Maybe we will.
  6. Jerry S

    Journalist asking for leads re science in government

    Very interesting article, Lesley. It sounds like Dan Froomkin would be a good person to contact regarding the CDC's and HHS's interference with the publication of the Alter paper. I've already written John Holdren. Thanks!
  7. Jerry S

    FDA/NIH PAPER IN LIMBO; PATIENTS UNITE, by Mindy Kitei

    Brilliant article, Mindy! You're doing the best XMRV/CFS reporting on the Web -- bar none. If only the NY Times and the Washington Post had someone as good. Thank you!!!
  8. Jerry S

    Article: The CDC XMRV Study: How Not to Find XMRV?

    This is Mary Schweitzer's Presentation to the Chronic Fatigue Syndrome Advisory Committee U.S. Department of Health and Human Services on July !7, 2006 in which she explains the problems with the Reeves definition. http://www.cfids-me.org/cfscc/cfsacjuly06.html This is a quote from her...
  9. Jerry S

    Article: The CDC XMRV Study: How Not to Find XMRV?

    Thanks, Angela. My thoughts exactly. To use the late Mayor Daley's term, they're using "insinuendo." Trying to pin these guys down is like eel wrestling. I'm off to watch Wiimbledon now and try to clear my head.
  10. Jerry S

    Article: The CDC XMRV Study: How Not to Find XMRV?

    That was Chicago's own Leonard Jason, Sing. He's a psychologist at DePaul University. He's also written an excellent paper completely trashing the CDC's revised International definition, AKA Reeves' empirical definition. In the CDC's XMRV paper, they try to pass off Reeves' empirical as 1994...
  11. Jerry S

    XMRV Patent application Judy A. Mikovits Francis W. Ruscetti San

    Yes! Live well and prosper. (I'm going to watch some tennis now and see if I can get rid of this headache.)
  12. Jerry S

    Article: The CDC XMRV Study: How Not to Find XMRV?

    Thank you Angela and Marco for your very interesting comments on "subgroups." I've often found myself asking, "Subgroups of what?" It seems premature to be looking for subgroups without having a clearly defined group first. I found this statement from the CDC's "Absence of Evidence" paper...
  13. Jerry S

    Daily Kos: Much Ado About Something! -- XMRV and CFS

    You're welcome, Wayne. That's what I thought, too, about the article.
  14. Jerry S

    Daily Kos: Much Ado About Something! -- XMRV and CFS

    From imokyroc's blog July 3, 2010: http://www.dailykos.com/story/2010/7/3/881376/-Much-Ado-About-Something!XMRV-and-CFS
  15. Jerry S

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

    Yet, the CDC claims on it's website http://www.cdc.gov/ncidod/dhqp/bp_xmrv_overview.html that the patients met 1994 Fukuda. This is not case. These are Reeves' "empirical definition" patients. Their own paper admits as much.
  16. Jerry S

    Article: The CDC XMRV Study: How Not to Find XMRV?

    On their website http://www.cdc.gov/ncidod/dhqp/bp_xmrv_overview.html the CDC states: This is simply untrue. They need to be held accountable for this perversion of science.
  17. Jerry S

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

    Excellent comment, shiso.
  18. Jerry S

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

    It really gets to me also, Otis. Their assumed tone of authority is maddening. They cited their own tainted "research" as if it were gospel. They have no respect for science -- only authority.
  19. Jerry S

    SIGN PETITION! XMRV: Allow Science To Progress

    Sent emails to my family this morning, Judder. Thanks for your hard work!
  20. Jerry S

    CDC XMRV Retrovirology Study on CFS Published

    Thank you, CBS. Yes, it's totally illogical. They can't even keep their story straight within a single sentence.
  21. Jerry S

    CDC XMRV Retrovirology Study on CFS Published

    From Mind Kitei's June 30, 2010 blog "CDC and FDA/NIH Studies On Hold": http://www.cfscentral.com/ The CDC now admits that their CFS program has been studying nothing in particular for over 20 years. This is beyond outrageous. And, they don't know how to find XMRV. It's on the record. ETA...
  22. Jerry S

    CDC XMRV Retrovirology Study on CFS Published

    Thanks for doing the math, Mark.
  23. Jerry S

    CDC XMRV Retrovirology Study on CFS Published

    Yes. In addition, finding 0 positive out of 107 means they simply don't know how to find XMRV. Total incompetence.
  24. Jerry S

    SIGN PETITION! XMRV: Allow Science To Progress

    Hi judderwocky, When I signed the petition, I didn't realize the text of the letter to be sent to the designated recipients was editable. It requires ones' name to be added under the closing "Thank you." I wonder if others similarly brain fogged missed this also. Some clarification would...
  25. Jerry S

    SIGN PETITION! XMRV: Allow Science To Progress

    A big thank you for the petition, judderwocky. Wow, all this and great pasta, too. Amazing! :Sign Good Job:
  26. Jerry S

    FDA/NIH XMRV paper ON HOLD

    I signed the petition, judderwocky. I also support Team NIH/FDA and Parvo for President.
  27. Jerry S

    Write new director of NIH Francis Collins

    Here's an online video of NIH director Francis Collins' interview with Charlie Rose on March 15, 2010. http://www.charlierose.com/view/interview/10909#frame_top Writing Dr. Collins now would be especially timely as there appears to be some horse trading going on between the NIH and the CDC...
  28. Jerry S

    Blood Feud by Mindy Kitei

    Thank you, dasiymay, for posting Part 2 of Mindy Kitei's excellent Blood Feud article. It's some of the best ME/CFS reporting I've read. Well-researched and well-written. I will be following. Best wishes, Jerry
  29. Jerry S

    What about ME?- documentary

    This is what we need. I'm glad to see that the filmmakers are doing such a great job. I think this film is going to make a difference. Thanks for posting this, dipic. Thanks, Kati. You're right.
  30. Jerry S

    video: Medical Hate Speech against ME patients -UK

    I just wanted to second garicia's post. I don't know how our situation could have been expressed more clearly or convincingly. Thank you, Robin.