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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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  1. KnightofZERO

    Big Data: An Important Tool for Complex Diseases like ME/CFS

    Big data and the various 'omics fields: genomics, metabolomics, proteomics, transcriptomics, is hugely promising. However I hope that one group (or several groups in close collaboration) can get funding to do these studies on us. Ideally under the umbrella of a research initiative which included...
  2. KnightofZERO

    Article: All in the Family: A Real Disorder After All? the Albright CFS Heredity Study

    I really like this article and study! Thanks. But the title is insulting, "A real disorder after all?" ... yeah we can wade through the corpses and see that is, in fact, the case. Pretty sure it's real. However, besides my rant on the title, it is a very promising study.
  3. KnightofZERO

    Famous (and sort of famous) ME/CFS sufferers

    This is the author of the Blue Sword and the Hero and the Crown? Wow. I wonder if she is up to do any advocacy?
  4. KnightofZERO

    Dr. Ian Lipkin and Dr. Mady Hornig, Use Deep Sequencing and Proteomics to Hunt CFS Vi

    Thanks Alex. I think Deep-Sequencing could be the most important thing to do. Just gotta get the "classic patients" which it sounds like they are making some effort to do: http://www.cfscentral.com/2011/10/q-with-scott-carlson-of-chronic-fatigue.html. Hopefully this project goes forward full...
  5. KnightofZERO

    Applying Venture Philanthropy to Chronic Fatigue Syndrome - article on WSJ blog

    Justin Reilly I agree with your concerns about "CF" and especially in light of this excerpt from Co-cure: ""Mady Hornig, MA, MD is a physician- scientist working at Columbia University on the role of microbial, immune, and toxic stimuli in the development of psychiatric illnesses."...
  6. KnightofZERO

    6 letters published in Observer (Aug 28)

    That's the best they could do?! L.O.L. Hopefully those who wrote letters will post them so people can see the difference between what was submitted and "what was selected" Maybe M.E.A or Invest in M.E. would be game to post all the letters sufferers had written? Sounds to me like they...
  7. KnightofZERO

    the UK Times escalates it's smear campaign against us

    Instead of George Orwell's "Two Minutes Hate" we have the "Two Weeks Hate." One sad thing is that the Psychiatry Lobby which believes in Cognitive Behavioral Therapy as curative--is probably trying to maintain its hegemony over research into our illness by attempting to publicize it as "toxic"...
  8. KnightofZERO

    Celebrating the ICC!!!

    Time for Wessely and White and Sharpe to find a new group to kick around. --though I feel sorry if Wessely really is being given free reign to investigate war veterans... But finally, maybe we'll have all the "it's all in the mind" or even more weaselly "it's all in the mind because the...
  9. KnightofZERO

    Endogenous Murine Leukemia Viruses: Relationship to XMRV and MLVs in Human DNA

    twenty five years at square one Totally agree with your statements Alex. Also understand the tapering issue. In any case, his presentation would seem to show there was a dramatic increase around the time of the late 70s to mid 80s which may or may not have still been ongoing. There needs to...
  10. KnightofZERO

    Endogenous Murine Leukemia Viruses: Relationship to XMRV and MLVs in Human DNA

    This is a possibility I wish were being investigated by at least one person who had resources, commitment and knew what the heck they were doing. I've seen several stories of people who, usually in the health care field, become ill after a getting a shot for this or that. And their coworkers...
  11. KnightofZERO

    Hooper's initial response to White re PACE Trial

    ....which is just Idiopathic Fatigue for Six Months! That's the only criterion! The only good thing that came out of this PACE fiasco is that he basically ADMITTED he's not been studying M.E. patients, or M.E./CFS (such as by the Canadian) or even CDC 1994 CFS (as by the Fukuda --which is...
  12. KnightofZERO

    *A CALL FOR ACTION!* We need the isolates sequenced!

    I agree, WPI needs $ It would go a long way to put the contamination theories to bed if more sequences were in GenBank showing the genetic diversity you'd expect from a natural infection--or given that there are no human MRV infections besides this one, more genetic diversity than would be...
  13. KnightofZERO

    My Health News Daily article "Chronic Fatigue Sydrome Proves Chronically Mysterious"

    That's exactly what it seems like to me. Once a strong biomedical definition is used that includes PEM, loss of 50% of activity, Blood volume loss and Abnormal Regulation of Blood Pressure (e.g. abnormally low pulse pressure, orthostatic hypotension, racing heartbeat), Neurocognitive disability...
  14. KnightofZERO

    Scholarships and Awards

    Research Award A similar idea is here on MECFSForums: Reposted Below: ""Many of you may know the story of the Nobel Prize, basically Alfred Nobel thought he was going to get an obit like "Merchant of Death is Dead" and did something to ensure he was remembered in a more positive...
  15. KnightofZERO

    Stars Not Aligned Any More: CFS SEP Panel Reverts , McClure on Board

    Thanks! Outrageous How about a Malcolm for a McClure? :thumbs up: Thanks for summary... Yeah, a lot of stuff on "HPA axis" (look it up via PubMed & you’ll see it would only be a bit of an oversimplification to say it's the mantra of the all in your head crowd when they want to be more...
  16. KnightofZERO

    Famous (and sort of famous) ME/CFS sufferers

    If anyone doesn't believe this is a serious illness of which the substantial majority Do Not get better and that advocacy isn't needed consider these reference links: forget me not ME_CFS_Memorial Sophia's Story Causes of death among patients with chronic fatigue syndrome. Jason...
  17. KnightofZERO

    Famous (and sort of famous) ME/CFS sufferers

    Commercial We, if the celebrity people who visit this forum are game, we should totally do a commercial! The most effective commercials are those with celebrities and dogs! Many times my sister saw the ASPCA "rescue an animal commercial" she was on the verge of tears. We have no dogs and...
  18. KnightofZERO

    Good News From The NIH..Patient Advocate for NIH State of Knowledge Workshop

    a penny and my thoughts Why not use a poll? This is a site built around a message board after all. Why not let people nominate whom they want and then conduct a poll of members--I think this would be the most democratic way to proceed. If the board is of the opinion this entire process...
  19. KnightofZERO

    It's the Antibodies Stupid, (big grins)

    Given that the immune responses in ME/CFS is really screwed up according to several studies... I would really like to know how specific the antibodies are for XMRV? Has it been done-- if so, just point me in that direction! It is really terrible that the WPI can't get any grants... and people...
  20. KnightofZERO

    Retrovirology Publishes Five Papers on XMRV and Contamination

    I can't comment on the papers--haven't read them, just skimmed the editorial. I do think it is sicking... I don't know which more-- that people would be happy about research findings because such findings could set back the cause for treatment and a cure for suffering patients (I mean: happy...
  21. KnightofZERO

    Dr. Cheney comments on the XMRV workshop

    Saliva Test? The only test that looked at respiratory secretions, the German Article from a few months ago (in healthy and immunodeficient) had no problem finding XMRV, and if they had known about the heterogeneity in the DNA sequence at that time, it would have presumably been even easier for...
  22. KnightofZERO

    From the 1st annual XMRV conference

    I got the impression some of the people are not at all too fond of each other.... I think there is a one more "camp" thinking it might be an artifact of immune suppression and not primary. The views on clinical trials were all over the board. Thought the question on the CDC's criteria, and the...
  23. KnightofZERO

    WPI: Andrea & Annette's' powerful words

    Wow thanks for posting! Great speeches and Andrea's speech made me feel really emotional. It is great to see these concrete signs that we're moving forward.
  24. KnightofZERO

    Q & A with CDC's STEVE MONROE, by Mindy Kitei

    I think we should try and send this piece out in letters to our Congressmen and to our Senators and, if possible, President. The evasive and crafted tone make it sound like it was made up by a bunch of people that flunked public relations in college or something (at least they are making it easy...
  25. KnightofZERO

    "A Commotion in the Blood," by Mindy Kitei

    *thumbs up* Thanks Mindy! It is another piece that makes your blog an invaluable source of information. I wonder if you are still planning to do your article on blood transfusion and ME/CFS? I think to paraphrase the vice-president (in a family-friendly way) that would be a very big deal. Most...
  26. KnightofZERO

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

    Thanks for posting. I think that it is really sad to think back on what patients must have felt like in 1996. Osler's Web had just come out, there was Media Coverage, and it seemed like some kind of infection theory was sure to pan out in the next few years and then treatments. I wonder if...
  27. KnightofZERO

    Conflicting Papers on Hold as XMRV Frenzy Reaches New Heights

    Wilhelmina Jenkins was a former CAA board member if I am not mistaken. I hope her quote was taken out of context, or clipped, or she was questioned in a leading way. It ought to have (and hopefully did) at least mentioned that with such a horrific illness that isn't funded for research except...
  28. KnightofZERO

    Blood from a Stone: CAA Dr. Suzanne Vernon's Analysis of CDC Paper

    Blood from a Stone Posted to the CAA website HERE Suzanne D. Vernon, PhD Scientific Director The CFIDS Association of America July 1, 2010 Researchers at the U.S. Centers for Disease Control and Prevention (CDC), along with collaborators in California and Germany, published a paper in the...
  29. KnightofZERO

    CDC XMRV Retrovirology Study on CFS Published

    I pretty much agree with this. We should thank him for the research and add that we hope his study can be released for publication as soon as possible. Right now we have no idea what is going on with his paper atm but the fact that he might be under a great deal of stress is certainly possible.
  30. KnightofZERO

    THE EMBARGOED STUDIES REDUX by Mindy Kitei

    Thanks for another excellent contribution. My first thought is the CDC couldn't find it in any positive controls, or any sample for that matter but they were going to publish anyway, until recently.... how arrogant!