The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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George's great summary of THE POLITICS of the xmrv workshop

Discussion in 'Action Alerts and Advocacy' started by Rrrr, Sep 15, 2010.

  1. Rrrr

    Rrrr Senior Member

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    George's great summary of THE POLITICS of the xmrv workshop


    rrrr's note: congressional hearings. right! now is the time to call for them.
    ______

    http://www.forums.aboutmecfs.org/showthread.php?7433-From-the-1st-annual-XMRV-conference/page50


    I think the conference didn't settle anything in the public arena for a very good reason. What we witnessed yesterday was a major power struggle going on. And it's not over yet. The two camps are Ruscetti/Mikovits/Lombardi/Silverman vs. Collins/Fauci/Lo/Jones.

    Everybody else is on the outside looking in.(grins)

    I don't know for certain but I'm pretty sure that the language used in the Alter/Lo paper was originally set up to wrest control of the research from the Ruscetti/Mikovits/Lombardi/Silverman group and put it firmly in the hands of Collins/Fauci/Lo/Jones where it could be more easily managed.

    The problem I have with the PMLVs being in the same family of Gamma viruses they all have similar sequences in the LTR's (long term repeaters). If you don't isolate and cross reference several hundred sequences you really don't know what you've got. I was ecstatic that Dr. Coffin said it out plain and simple that the sequences that Dr. Alter and Dr. Lo pulled tell us absolutely nothing. They may be Polytropic or they may be Xenotropic. There are less than 700nt per each sequence and you really can't tell from that. Even going off of the env sequence is questionable because many MLV's in the Gamma grouping share the some of same env sequences.

    It seems to me, especially after watching the Q and A yesterday that Ruscetti's group is firmly in control and has so much information and backing that they are the ones driving the boat. They have the ability to take this research in any direction they see fit and the Wittemore's and Ruscetti's are powerful people who know powerful people and have the backing of an incredibly large group of small people (us) who create a vortex of power by shear numbers.

    Dr. Mikovits may be the mouth piece (some times quite literally, grins) but make no mistake Frank Ruscetti and his wife are in charge. You could see a smugness about them yesterday. Not only do they have research that is way in advance of what was presented but they are controlling who knows about the advanced research and what direction those researchers take in building on it.

    Meanwhile down on the farm you have the researchers who are more main stream following the lead of Collins and company. The Collin's crew is also trying to manage who knows what but for different reasons. The Collins group wants control of this information to use as leverage on several fronts.

    First controlling the research you control the money going to the people doing the research which means you control the people receiving the money and they owe you favors in return which can be used to create more favors from other people and so forth and so on.

    Second controlling the research allows you to control the message. If they can make the diagnosis and treatment of ME/CFS follow the same path as the H. Pylori work then the public would never know about the miss-steps in the past and no one would get egg on their face. Patients however, would prefer a more HIV type message to the public. In this scenario congressional hearing would be called and at least on a TV level people would be vilified for decades of miss-treatment of a large group of patients. Collins et al wants to avoid this scenario.

    (H. Pylori - Dr. Marshall proved that bacteria caused stomach ulcers and antibiotics would literaly cure them. It took down a huge industry of surgeons who operated on hundreds of patients per year to remove ulcers and portions of patients stomachs. It was believed that the ulcers always came back because people engaged in the same stressful and poor habits after the surgery. Ulcers were caused by stress, poor eating habits and drinking. The new form of treatment was implemented very quietly over a five year period and no one really new about the change unless you were a patient.)

    Third controlling the research in to XMRV will also provide leverage with the Pharmaceutical companies the kind of money that stands to be made here is in the Billions with a capital B. If Ampligen cost 20 thousand a year to take and only say 10 million of the 17 or more million people take it then you are looking at 2 Billion a year in revenues for the first 7 years. That's a lot of Bucks. A lot of Pharma companies would be willing to stuff cash into political campaigns, kickbacks and honorary job titles for that kind of money.

    So we have a tug of war on who gets control of research. There are way more answers than were presented yesterday and some of it leaked out like the Urine Test (grins). But it's not being presented because of the power struggle. The Ruscetti's are hording information so they can come out and make a big splash. The Collin's crew is suppressing information until they can get control.

    That's why no one has made a definitive statement that XMRV actually causes ME/CFS. YET.
     
  2. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Stunning summary George - thank you again.
    CDC, NIH, FDA etc have had every fabulous opportunity to lead the way, make great scientific discoveries, control the research, the purse strings and the dissemination of public info about this illness for the past 25 years. In short, they had everything. Well they turned their noses up at the opportunity and at us, and blew it - too bad.
    Now, in a swift and stunning manoeuvre, motivated essentially by their humanity as well as scientific curiosity, the WPI have wrested the carpet out from under their feet. Well, well ... the kingdom, the power, the glory and large profit margins to the WPI, I say ...
     
  3. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Although a shiny new era of mutual cooperation and rewards would be preferable ...
     
  4. Rrrr

    Rrrr Senior Member

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    amen to that. but ha! i doubt it will happen.
     

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