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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Cookie Monster

    McClure's XMRV Contamination Conversation

    Hopefully some more papers to follow - Dr Lo answers McClure's response letter in PNAS yesterday and his last sentence stated "Our recent collaborative studies with a National Cancer Institute group have shown that we can detect antibodies in most patients with CFS with positive gag sequences...
  2. Cookie Monster

    Rumor Viruses author weighs in on XMRV debate

    Exactly - only employees of state-funded establishments could do this.
  3. Cookie Monster

    Whose XMRV serology assay is McClure using?

    I know the transcriptions say "no we did it" but i think Dr Judy actually said "no, we didn't" meaning either mcclure never asked for her help or possibly that mcclure didnt do any of that testing herself. Interestingly - on the TWIV 99 episode in Boston - McClure admitted to Racaniello that...
  4. Cookie Monster

    WPI Vice Pres Interview on Radio KUNR

    Listening to the podcast and reading this thread at the exact point so thought id say - its around 25mins 40secs in
  5. Cookie Monster

    For the XMRV +; What are you upto?

    Thanks for posting your thoughts on this Rafael and i too did pmsl at the last line :Sign Good one: CM
  6. Cookie Monster

    FDA/NIH Paper will be published

    Hi freeatlast I disagree with the point you make here - i think the negative paper covers the CDC's back for not acting sooner in the interim period since the Lombardi paper in Science in terms of them trying to protect the public. Lets face it the CDC study cant have taken very long to complete...
  7. Cookie Monster

    FDA/NIH Paper will be published

    Thanks Mindy for all of your hard work - that's wonderful news :victory:
  8. Cookie Monster

    The Independent newspaper - Study that 'solves' chronic fatigue blocked

    Agreed Villagelife - this paragraph has the Weasal stench.:Retro mad: This journo is just another slime-ball - writing the usual old b*llocks - he should be made to reveal that source not use the general word "scientists" which is so non-descript anyway. If it were a biomedical scientist...
  9. Cookie Monster

    good news clip of judy m explaining how we get sick from xmrv

    This clip is very old - was put on Youtube on 30th march but i think it was possibly even made last year around the time that the science article was published
  10. Cookie Monster

    XMRV YouTube Video

    I found the music really hooked me into watching it & the visuals are cleverly intwined too - very well done starryeyes!!! CM
  11. Cookie Monster

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    Im liking your attitude Pollycbr :smiley-hug: - i think from a young age i was overly concerned by what other people thought, yet as time has passed and the fullness of my life has been gradually eroded im learning to migrate myself over to a stance much closer to yours :Retro smile: Forgive me...
  12. Cookie Monster

    Demographic of MALES!

    Muffin - Please see this link - there is a section on X-linked dominant genes http://en.wikipedia.org/wiki/Genetic_disorder It dont think it works quite like you suggest, Son of man with trait = no passing on of mutation/trait Daughter of man with trait = guaranteed passing on of...
  13. Cookie Monster

    Demographic of MALES!

    I dont think anyone has mentioned the implication of X and Y chromosomes in terms of determining the underlying gender of the disease population. It seems likely that since genetics plays a part in this illness - it may well be for example that the common RNaseL upregulation/gene mutation seen...
  14. Cookie Monster

    Demographic of MALES!

    I think you make good points here Binky. I also think the male physiology of increased muscle bulk will mean many men could be less physically disabled by ME therefore possibly still able to be mobile enough to work to some degree providing their brainfog & pain isnt too bad. Thats my experience...
  15. Cookie Monster

    Clarification: LP threads

    In addition to Suzy's sterling afforts - id also like to highlight another important point about the LP. MEA's large patient survey has been referred to as being evidence to suggest the LP is worthy of being given consideration. Quoting the result that 25% of patients surveyed reported...
  16. Cookie Monster

    MRC Research workshop: Note and presentations published

    Hi Mark You can still bypass the error code to see the "declaration of interests" by instead using the submenu link in the far left hand column/ "main menu". Three members are still yet to make any declaration after all this time...
  17. Cookie Monster

    AABB "actively discourages" CFS blood donation in USA!!!

    Hi Cort, Am i right in thinking that in most European countries (not sure if we do in the uk too?) they employ the Intercept protection system that was announced fairly recently as being capable of eradicating the threat of transmitting XMRV infection from the blood banks? Im just wondering...
  18. Cookie Monster

    Is Prostate Cancer an Infectious Disease? ( XMRV)

    Good spot V99 - dont suppose he has any money for us? :Retro frown:
  19. Cookie Monster

    Is Prostate Cancer an Infectious Disease? ( XMRV)

    One piece of information that stuck in my mind with regards the cancer part of the talk is that it mentions that frequent ejaculation is important in helping to stave off prostate cancer. I can think of a few rude names that type of therapy may get called.:winking: On a more serious note -...
  20. Cookie Monster

    Is Prostate Cancer an Infectious Disease? ( XMRV)

    Sharing the :victory: :victory: :victory: I dont think i have ever listened to anybody present that much information, so clearly and concisely in such a short space of time as well. One rapid summary....even so i think i need another listen too as my grey matter isnt complying too well lol...
  21. Cookie Monster

    New WPI licencing arrangement ......... with themselves ?

    In agreement with the last two posts. There are legal requirements to satisfy in the form of corporate law & accounting standards which determine that you cannot include commercial practices within a not-for-profit entity. Also...if Unevx is being set up as joint venture, that would allow VIPdx...
  22. Cookie Monster

    Interviewing Dr. Coffin

    Oops! thanks for highlighting Michelle - my hands are held up here - i read most of this thread a week ago and then dived back into it on a mission following reading stuff about the Invest in ME conf. I wrote without taking into account the most recent few posts (esp #134!!) ...so i understand...
  23. Cookie Monster

    Interviewing Dr. Coffin

    Hi Rrrr - i very much appreciated reading this thread , thanks for all your efforts :thumbs up: It would be very interesting to know what John Coffin now thinks of Brigette Huber following her "performance" at the Invest in ME conference on monday. Presumably he would have been unaware at the...
  24. Cookie Monster

    New XMRV study to be undertaken.

    Hi Bob, im wondering if you have seen this month's poll on the ME Association's website. Its specifically about whether people feel their ME was triggered by vaccination, and if so, which one. Out of 444 replies to date, Hep B has received approx 60% of the votes - its way way out in front...
  25. Cookie Monster

    5th Invest in ME/CFS Conference - Programme May 24 2010

    No chance of that thank goodness :Retro biggrin:. I think that a line in the sand so to speak has been unofficially drawn, McClure sticks to prostate cancer XMRV research and leaves CFS well alone. The conference where McClure is speaking about XMRV (prostate cancer), which you may be thinking...
  26. Cookie Monster

    Scandal in BMJ's XMRV/CFS Research

    I agree - An immense effort Parvo - & very much appreciated - your work will certainly have an ongoing affect on that journal .:thumbs up:
  27. Cookie Monster

    German study finds xmrv

    would have helped if i had realised at the time that i cant write in german though :winking: :Retro rolleyes:
  28. Cookie Monster

    German study finds xmrv

    Cheers for replying Natasha :thumbs up: very much appreciated. I may throw out a quick question to the authors just out of curiosity. Hopefully the WPI study on XMRV infection following blood transfusion should throw up some useful data down the line (now im already wondering if they...
  29. Cookie Monster

    German study finds xmrv

    Hi Natasha, Would it not be true that both statements are applicable to the 9.9% figure from this sub-set of the study? - i dont see myself that they are mutually exclusive options?
  30. Cookie Monster

    German study finds xmrv

    This was pretty much my feeling too - although i said its likely treble the prevalence in transplant patients since if you have a transplanted organ i think its also likely you will also be given some transfused blood too from the blood supply (unlikely the blood & organ would come from the same...