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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. Sunshine

    From the 1st annual XMRV conference

    Excellent question Bullybeef. CDC in it's history has classed CFS as an 'Emerging Class 1 infectious disease'. The World Health Organisation classifies ME, as a neurological disease. (ICD 10 - G93.3). Even if none of the above had happened, there are numerous studies showing the disablity...
  2. Sunshine

    XMRV Conference - On YouTube

    Stoye is employed by the UK Medical Research Council (MRC). The MRC say ME does not exist and CFS is a psychiatric disorder. The MRC give psychiatrist Simon Wessely millions and have files on ME protected under the official secrets act until the year 2070, when most people with CFS will be...
  3. Sunshine

    Urine-Based XMRV testing?

    Hi. XRMV DNA in the urine is no real surprise biologically, as urine is filtered blood and XMRV is dectable in the blood. It is however a surprise to CFS patients as they didn't know. Urine is a body fluid and retroviruses are found in body fluids, hence HIV is sexually transmitted.
  4. Sunshine

    From the 1st annual XMRV conference

    Hi. Here's the actual quote. Dr. Roger Dodd – American Red Cross Source: http://www.facebook.com/notes/xmrv-global-action/transcript-of-the-1st-international-xmrv-workshop-qa/438284026796 Similarly, Dr John Coffin has said previously on Internet radio XMRV may have been in the...
  5. Sunshine

    From the 1st annual XMRV conference

    Moderator: Post deleted for offensive content.
  6. Sunshine

    From the 1st annual XMRV conference

    Yes, lets keep on track. Still waiting for tweets on Mikovits
  7. Sunshine

    From the 1st annual XMRV conference

    If you would like to explain how human antibodies to XMRV are detected in CFS patients, please go ahead? (Antibodies are impossible to be detected in human blood to a contaminant though, so don't go ahead actually). Perhaps you are more learned than Switzer from the CDC who designed and...
  8. Sunshine

    From the 1st annual XMRV conference

    :) Maybe Andrea know's the secrets we aren't allowed to know hence she is excited but we don't get to hear why. Did we miss tweets from the Blomberg/ME Research UK XMRV Report from UK patients? http://www.meresearch.org.uk/research/projects/xmrvsweden.html
  9. Sunshine

    From the 1st annual XMRV conference

    More than likely, unless someone's accidently 'tweeting' us private conversations from a dental clinic.
  10. Sunshine

    From the 1st annual XMRV conference

    Brigitte Huber is on a DVD (InvestinME Conference video 2010). She simply refused to listen to Dr Judy Mikovits explaining on a 'round table session', why contamination has been ruled out using WPI technology. After Judy M had been talking for about 10 mins non stop at 100mph, Brigitte just...
  11. Sunshine

    From the 1st annual XMRV conference

    As may the fact yet again old blood is used. (5 years old), only 3 patients had new blood taken in a test that doesn't work. No one has ever replicated the WPI's methods and NOT detected XMRV. It's that's simple to understand. FOLLOW THE WPI METHODS Brigitte, and then show us you can't...
  12. Sunshine

    Looking to Interview Recovered ME/CFS Patients

    You can't 'recover' from an exogenous infectious retrovirus, however you can recover from a 'chronic fatigue' state, that isn't retroviral in origin. Caution should be taken in promoting 'recovered' people who have no diagnostic test to show they ever had a neuro immune disease that is now...
  13. Sunshine

    From the 1st annual XMRV conference

    11 months on since the SCIENCE paper and the BBC are still d-noticing the retrovirus. Hard to change a life-times habits... Just wait till it all kicks off. Kids are locked in psych units as we speak in the UK, due to being infected. Maybe the BBC can do a documentary on that.
  14. Sunshine

    UK Study - Pediatric CFS

    ME is finally on TV regarding this paper we're discussing, maybe as it was about children: http://www.youtube.com/watch?v=JtsZH7pn-Co http://www.youtube.com/watch?v=OQR9lXxVTgs
  15. Sunshine

    From the 1st annual XMRV conference

    Hi. It means there is a treatment to make contaminated XMRV/MLV blood, safe.
  16. Sunshine

    Wall Street Journal - XMRV Inactivation in Blood Supply

    Well found George. Isn't this the first time we've heard about a human XMRV/MULV 'isolate'? If so it's a big next step, and as you say the 'titre' ability is intriguing.
  17. Sunshine

    UK Study - Pediatric CFS

    This information about oxidative stress was known to researchers years ago, but no one acted upon it. 6 positive XMRV/MULV studies later and the tide is turning. Infected babies and children who become adults with ME/CFS who become the laughing stock of the medical profession and blamed...
  18. Sunshine

    XMRV and Dr Byron Hyde

    I can only think Dr Hyde is not happy as he is possibly confusing that people in AMERICA with CFS, some have ME, but aren't allowed to use the name. Yes the CDC have made CFS a label for anyone to come join the fatigue party, but inside the label CFS, well CFS also contains people with neuro...
  19. Sunshine

    UK Study - Pediatric CFS

    This is good news, thanks for posting. When I was a child I got told my ME was caused by young girls skipping breakfast, periods, and believing in a virus. What did Psychiatrist Simon Wessely who sees children in his unit in London..................... http://www.kcl.ac.uk/projects/cfs/...
  20. Sunshine

    When will we have the first useful results/summaries?

    Here's the deal. Until the Holy Grail of a new CFS (or what XMRV+ CFS becomes - HGRAD?) biomarker is found that only people with XMRV infection have (consequence of XMRV causing CFS), scientists may well have to go back to what was found already and that will take huge funding and time. If...
  21. Sunshine

    E-mail Back from Doctor Who Has Worked With Retroviruses for 35 Years

    Rebecca Underscore________ What a strange email. * XMRV is a human infectious retrovirus. (See SCIENCE paper) * All previous human exogenous retroviruses before XMRV cause human cancer, neurological disease, immune supression. ME is a neurological disease (ICD-10 G93.3). People with ME...
  22. Sunshine

    Myalgic encephalomyelitis (me), retroviruses, gambling & medical taxonomy.

    Hi ggingues, yes Komaroff was the person who said this. It's quite a well known quote. I think possibly from memory he said it on video too, not that it matters. For the record, here's the quote. "There are now over 4,000 published studies that show underlying biological abnormalities in...
  23. Sunshine

    BIG NEWS: NIH Director to open XMRV conference!!!

    We need that NIH positive MULV study of 1,000 people..... that would wake people up. The public don't care or understand about CFS and think it's just a chronic fatigue syndrome (strangely enough!!!!). Infected blood, now they can understand that. I'd bet the farm on this conference...
  24. Sunshine

    XMRV found in ME/CFS samples from "all of Europe"

    Good points. So how is possible that CFS patients actually *do* share an AIDS like syndrome yet we are told we are hysterical and to home? Well reading from the CDC cook book I found......... CFS doesn't mean anything as it has no diagnostic test and is a diagnosis of exclusion. CFS...
  25. Sunshine

    Simon Wesseley's Wife

    Doesn't the dear lamb sit on an UK Department of health ETHICS committee? Who would benefit from that I wonder?
  26. Sunshine

    My New Video - The CDC vs CFS/ME

    What a fantastic video, really tells it like it is!
  27. Sunshine

    Childhood stress leads to adult ill health, studies say...

    Good question, hypothetically of course, maybe it could be someone who is fascinated in psychological reaction to trauma?. By chance, <he who cannot be named> own father immigrated to Britain from Prague (through the Kinder Transport programme) and escaped the holocaust in WWII. I would never...
  28. Sunshine

    BIG NEWS: NIH Director to open XMRV conference!!!

    Thank you for posting this Rrrr. Out of interest, was the NIH doing a study of XMRV in the blood supply and are yet to show their results? NIH. How do we pronounce that? Like this? :Retro tongue: http://www.youtube.com/watch?v=7D4Ud8-jric
  29. Sunshine

    Article: CAA Talks With the Experts on XMRV

    losing brain function is sad Very glad you raised this Alex, and I like your phrase: neurological grammar degradation I would love to know if this is temporary of permanent. (No research has been done on this area of neurology in ME. Nobody ever asks us patients anyway, and no one cars...
  30. Sunshine

    XMRV Workshop Program

    Not rocket science There are two ways to prove causality if you think about it. 1) Give XMRV+ ME/CFS patients Anti-Retrovirals and see if they get better, en mass. And/or 2) Find a unique immune abnormality only people with ME/CFS have, who are XMRV+ (Like CD4 in HIV). Possibly it...