Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Chicago Tribune: Manipulation alleged in paper linking virus

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by LJS, Oct 3, 2011.

  1. markmc20001

    markmc20001 Guest

    Well I disagree. I think for the majority of people here it is obvious something is very wrong with this process, news flow, and amount of non-partisan research being done through the decades. The crazy statements that XMRV will not be found before research starts. Massive amount of media propaganda around our disease. Phony diagnosis, changed from ME to CFS. All the CBT and GET and pace trials that come at us weekly. The millions of letters going to the CDC and CFSAC through the years with just plausible deniability in response not research dollars. We could even go in to cancer treatment, where doctor Burzynski has been sued repeatably by the FDA. Everything taken as a whole is the conspiracy.

    I bet if you talk to all the people here, at least 30% would agree there is some sort of conspiracy going on. By the true definition. The pure defintion of conspiracy. People working together to deceive. The other 70% are people passing by and not smart enough, or don't spend enough time to figure it out.

    The idea is nobody can talk about it. Except those willing to tell the truth, and risk their career and reputation.

    You can be sure, for those who come out publicly against the establishment, the media spin cycle will chew them up and spit them out with 10-20-30 or more well placed articles. Just like the articles we all witnessed here in the last few days. Just ask Rupert Murdoch if you don't believe me.

    The whole group, not just the retrovirologists you speak of, have made a career out of keeping the HGRV buried. For 30 years! Right from practically day one when the head researcher at the CDC had the "Dear Sir" letter on his wall!! It made it seem as though CFS research was a joke.

    Just look at Wessley's and Reeves career for instance. that right there is an multi-hundred million dollar venture that has spanned decades.

    Or those running the CAA who make big bucks, but 90% of the patients do not like. They all get paid well for doing whatever they are told.

    The multi million dollar Pace trials? CBT, GET. All of it is toast.

    All the management clowns pulling the strings in the CDC and MRC. All the management who has knowing supported these behaviors.

    The yahoos preventing Dr Friedman from just TEACHING about CFS/ME is certainly part the whole machine.

    How about he careers of those who changed out CFS for ME in 1988?

    How about the media folks who write all those biased press releases, and spread them to every newspaper and media outlet around the globe? They will have to go to!

    How about those wonderful videos with 80 year old ladies with CFS working in the garden and running her dog on the beach?

    Heck, even the posters here who constantly post lop-sided arguments are going to be looking for something else to do.

    All of those people are out of work. That is taking down an EMPIRE Cort!!

    It all makes perfect sense.

    They will all be out of jobs the day HGRV's are discovered and the real treatment ans research begins. They are all out.
  2. currer

    currer Senior Member

    we need to remember that the science has been continually developing since the initial discovery of XMRV by silverman.

    Initially researchers characterise a new virus as best they can. As their understanding of their discovery grows, they need to modify their initial ideas and share their new findings with each other.

    There is nothing wrong with this. It is inevitable when you are working with unknown agents.

    So what has concerned me in the response to the XMRV discovery was the refusal to allow the WPI team to publish follow-up papers which would have added to our knowledge and helped other researchers learn from their methods how to find the virus.

    We now know that the original clone, VP62, was contamination. This is why the negative papers could not find any xmrv and why the negative findings piled up.

    But Judy Mikovits repeatedly said early on that XMRV was not found by setting the primers to the VP62 clone, and that she was finding a much wider range of viruses in her patients.

    But because no further studies from her were published she was unable to get this message out to the research community.

    So my view is that the science was blocked early on and she was forced into a false position.
    Where was the impartial learning from each other and working together to discover the real facts?

    How can science develop if researchers cannot communicate with each other?

    I was present at the Invest in ME conference in May this year when we heard from a very excited and happy Dr Bieger (Munich, Germany) that with Dr Mikovits help his team had been able to find 40% of their ME patients positive for XMRV.

    I came home thinking that I would soon hear more about his work....but no paper published so far.
    Where is it? Does anyone know?
    Wildcat, PokerPlayer and leela like this.
  3. ukxmrv

    ukxmrv Senior Member

    There's no evidence to support your assumptions though Esther. You and I don't know what Dr Mikovits and the other labs discussed with the BWG.

    There is no evidence to support your assertion that "they would do anything but try".

    That's where being open minded comes in. You have beliefs about the BWG that are not confirmed by any fact or evidence. Only your opinion of how they operated.

    From what Dr Mikovits said at the IiME conference it sounded more like the labs were being told what the conditions would be.

    Once again if you have any evidence for your beliefs please share it here - otherwise it just another unverified opinion on what could have happened - just like the rest of us have.
  4. Esther12

    Esther12 Senior Member

    I couldn't see where I had made that assertion, and I don't really know what it means I'm afraid, so cannot now try to support it.

    We don't know exactly what was said between the BWG and Mikovits, or how conditions were set up. I've never said otherwise. I have said that I think it's likely that the BWG wanted to find out if a detectable retrovirus was being spread through the blood supply, and would have tried to set up a tst which would allow them to find out if this was the case. Until there is some evidence that they set up collection/storage of samples in a way that Mikovits/WPI said would make it harder for them to test accurately, I see no reason to think it's likely that happened. It would be very strange if the BWG had set this test up in a way which meant the most accurate and reliable tests could not be performed, and I see no reason to think that this happened.
    RRM and Sam Carter like this.
  5. currer

    currer Senior Member

    I just want to see FAIR research on the retroviral connection to ME continue.

    This means research which takes into account supporting evidence, such as the remission Dr Snyderman has achieved in his leukemia, not only lab-based PCR studies.

    I cannot beieve oncologists would not be excited by the potential to treat hitherto unresponsive cancers.

    I would like to see trials of ARVs go ahead. Lets get this investigated from all angles.
    leela, ukxmrv and Enid like this.

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