• 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. O

    Kogelnik, Friedman and Silverman on the Radio

    I totally disagree with your perceptions on this. The reason things have accellerated has nothing to do with acceptance or people who are in a place of acceptance. Just the opposite actually. People like Rivka doing a one woman protest is definately not a person who has accepted things as they...
  2. O

    Petition in support of Mikovits

    Please consider signing. https://www.change.org/petitions/fairness-for-mikovits
  3. O

    Article: Mikovits Era at WPI Ends - The WPI Makes the Right Move In Letting Chief Researcher Go: An

    If a researcher swore they would never approve a grant with Judy Mikovit's name on it that person should be reported to an ethics board. Cort I'm really bothered by some of your remarks here. Especially the one about if you have a family to support you find a way to get along at work. Do...
  4. O

    Ruscetti Acknowledges Resuse of WB Image 2

    Isn't it being reported that not all of the ONLY 15 patient samples in the blood working group study were actually tested at the WPI/Mikovits. I'm hearing some of the samples were tested at Vipdx . Mikovits does not and has not fealt comfortable with the Vipdx testign accuracy. So is the issue...
  5. O

    Article: Mikovits Era at WPI Ends - The WPI Makes the Right Move In Letting Chief Researcher Go: An

    Exactly. Annette started this institute with the best of intentions and great enthusiasm but she was Naive to think she could be a hands on decision maker of a scientific Insntitution. There should have been an experienced director hired and that person should have been the manager while...
  6. O

    International ME Association Update

    Hmm.. What damage? So far what I have seen the IMEA do is. 1) Present a scientific analysis presenting arguements for the validity of HGRV's infecting human beings. 2) Taking any patients questions and asking them directly to the CDC. 3) advocating for the use of objective measures...
  7. O

    Article: Light on ME/CFS I: Bad Reception: A Key to ME Uncovered? The Light Gene Expression Studies

    What kind of ME/CFS patient has never had deconditioning? With PEM being the hallmark of ME I can't see how it is possible not to be deconditioned unless you are one of those rare individuals like Michelle Akers was and could get a medical team to help you and push yourself beyond the bounds of...
  8. O

    $$$ for WPI vote daily now in Vivint Round 2!

    Why isn't the CAA asking it's members to vote in this contest for both the WPI and the Action Network? They have almost 6000 likes on facebook. That would be more than enough voters for both to crush the competition if they were split between the two. Has anyone asked them to support the...
  9. O

    Article: Light on ME/CFS III: A Different Herpes Virus for CFS? - Varicella-Zoster, Shingles and ME/

    How would outbreaks of ME throughout history fit into it being a genetic predisposition or disorder. Incline Village and Surrounding towns, Lyndonville and surrounding towns,The Royal Free hospital etc.. etc... ? Outbreaks like that do not fit into the genetic predisposition model. Only an...
  10. O

    $$$ for WPI vote daily now in Vivint Round 2!

    I think some of the winners in chase cheated. Vivint seems to be doing a better job keeping things respectable however.
  11. O

    Article: Light on ME/CFS I: Bad Reception: A Key to ME Uncovered? The Light Gene Expression Studies

    If you speak with the Lights again would you mind asking if they plan on publishing a comparison of ME/CFS patients with MDD patients?
  12. O

    Article: Light on ME/CFS II: The Dorsal Ganglia - Ground Zero for ME?

    THe control group would be healthy volunteers to start. This is what most control groups are in initial studies. And you would not want them to be contacts of the patient either for fear of common environmental exposures. What other cohort would you use? According to Jason Fukuda includes a...
  13. O

    Article: Light on ME/CFS II: The Dorsal Ganglia - Ground Zero for ME?

    And hence the need for specialized autopsy studies with a well defined CCC cohort. We've needed this desperately for years. Plenty of ME/CFS patients have been willing to donate there bodies to science for decades. Where are the researchers willing to undertake this endeavor?
  14. O

    Article: Light on ME/CFS I: Bad Reception: A Key to ME Uncovered? The Light Gene Expression Studies

    There seems to be a lot going on here. At first read there seems to be promise here after reading this write up. Many questions linger in my mind about the Lights work. 1) how was there cohort selected? Did they use CCC and or specific parameters measuring PEM? 2) Have they published...
  15. O

    Article: The Singh XMRV Study Strikes Out

    I guess that depends how sick you are. For those with ME hanging on to life by a thread 7 months may not even come.
  16. O

    Article: The Singh XMRV Study Strikes Out

    Anyone can make a good arguement for or against just about anything. Evidence will lead the way to the truth not arguements. There are good arguments that global warming is not occuring yet the evidence does not bear this out. There were good arguments that the earth was flat and cold...
  17. O

    Article: The Obama Promise on Chronic Fatigue Syndrome

    Proud? I'm an American and I'm not proud how this government has purposefully ignored, ridiculed , belittled and basically let us suffer and die for the past 25 years. SO the president fielded a question and said he would look into it? Is this all it takes to be proud to be an...
  18. O

    Article: People With ME/CFS Protest in Front of Department of Health and Human Services Building

    Funny, I thought these 6 patients really did so something.
  19. O

    Negative XMRV CFS study with Ila Singh's name on it (University of Utah)

    This was not a replication study. Many variables were changed from the science paper. If you read both papers you will see that many variables involving the assays were changed. Why would you find XMRV in prostate cancer and then change assays in this paper. Did she check against her own...
  20. O

    Article: The Phoenix Rising Board Letter to CDC CFS Research Chief Unger

    Why would you want to get away from studying victims of ME/CFS outbreaks. They are probably one of the best ways to make sure you are studying a tight cohort of ME patients? Post exertional Malaise has it'sown defintion issues. How do you define PEM . What cutoff points, measurements and...
  21. O

    Schutzer, Natelson study of XMRV in CSF article

    Does anybody else find it odd they did not test the CSF for Lyme also to make sure the CFS patients did not have Lyme and or the Lyme patients did not actually have CFS. Given the overlap of sympomology between the two I would hope they would have done this. Lyme blood tests are notoriously...
  22. O

    The BIG CHASE: funding US ME/CFS non-profits

    What will Phoenix Rising be doing to help the WPI win?
  23. O

    Time to Vote for MCWPA Public Service Announcements

    I found the music on number 1 distracting. It made me want to tune out. I thought 2 and 3 were excellent. 4 was good but made me dizzy.
  24. O

    Article: XMRV at the NIH State Of Knowledge Workshop (SOK): The Mikovits Coffin Debate

    That's how I understood what he was saying also. From his statements at Demistifying Medicine he fealt his work and Lo's was partially confirmatory and contamination was rigorously controlled for by himself and Lo. Alter saying Coffin's work is compelling does not equal Alter leaning towards...
  25. O

    Amy Marcus and Lenny Jason as guests at White House Chronicles with Llewellyn King

    (post edited due to request that this info remain private).
  26. O

    Article: XMRV at the NIH State Of Knowledge Workshop (SOK): The Mikovits Coffin Debate

    Thank you for posting Mindy's interview response from Alter. It does seem to differ from this article quite a bit and she is an experienced health reporter. Interesting that in Alters demistifying Medicine talk Alter also stated that he and Lo's work at least partially confirmed Lombardi et...
  27. O

    Article: XMRV at the NIH State Of Knowledge Workshop (SOK): The Mikovits Coffin Debate

    What other reporters and Bloggers did he say this to besides you? I would like to ask them if they have the same interpretation of his words as you do. So far no bloggers or reporters have reported that he said this that I am aware of.
  28. O

    Article: XMRV at the NIH State Of Knowledge Workshop (SOK): The Mikovits Coffin Debate

    I disagree that during moderation Alter was leaning on the that XMRV was a contaminant getting into WPI samples. That is not what he said during moderation at all. You seem to be taking a lot of liberties in saying that. In fact he said he was having difficulties in the next step in...
  29. O

    NIH State of Knowledge This Week - Patient Advocate's Comments

    It would seem a rather lame excuse. They have had plenty of time to figure out how to get a presenter/presenters into a shot in a larger venue. I thought the idea of this conference was to stimulate research interest. Would you not want the largest venue possible to pack as many researchers in...
  30. O

    Dr. Lombardi is Research Director

    What epidemiological studies have been done on ME and CFS that looked at the incident of ME within families and or sexual partners? I believe this is an area where there is a dearth of studies available. Judging by the family prevelancy poll on this forum there seems to be an extremely high...