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First International XMRV conference

Discussion in 'Action Alerts and Advocacy' started by Kati, Jul 21, 2010.

  1. George

    George waitin' fer rabbits

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    What SickofCFS said. From my slightly dented butt. (grins)

    What we want, what reality is; the distance between the two is the measure of our suffering.
  2. judderwocky

    judderwocky Senior Member

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    The govenor of Nevada... apparently he was responsible for securing a chunk of their funding..... for their shiny new building


    the concern is over how the comittee will actually recieve these letters. dealing with these issues this way is considered out of the ordinary. It simply will not make sense to them and will reflect negatively on those we are trying to support....

    i dont think anybody is overjoyed that she is not speaking... i dont want to give off the impression that i don't want her speaking.... she is better than half the clowns at the conference....

    the issues is entirely one of perception however... and this will be perceived as meddling on our part...

    yes the conference will have some other people on the other side of the isle... switzer ... what ?!?? ... but these things have to happen...

    the scientists are going to have to listen to the procedures of each group... the group with the best science will one day shine out....the science WILL speak for itself....

    HIV took three years to be verified, and the people that verified it called it a different virus and tried to take credit for it... but the genetic sequences don't lie and the original authors eventually got credit...

    to a patient group , like us, waiting that long is an enternity in hell.... but understand most scientists are not sick, and have never experienced this hell first hand. i get how upset you are. the thought of waiting years for this, is beyond the scope of my patience too

    but there are issues of perception here... every group has its "own" way of doing things..... and we will alienate them from our demands if we focus on this particular issue....

    its like this.... they go into these conferences feeling like the community chose these scientists for speaking... if we force them to listen to somebody we want them to hear... thats not going to make her the "expert" in their mind... their very embedded ... for better or worse... in the procedures and deliberations of these committees.... to override that on the whim of people that are not scientists is going to make them discount anything she would say... they would know she had been placed there by outside entities....

    also.... rusceitti might be the expert on CFS... but as far as gammaretrovirus it seems he and his wife have just about more eperience than everybody else.... i saw that "bootlegged" version of his speech to the emory med students and he is a fascinating scientists to watch.... his work is ingenius in my opinion... and i gathered from that vid that it was he and his wife that were so good at finding the right sequences and what not that made the pcr so good in their experiments (that appeared in the Science paper).... they probably did snub dear judy...and they are kinda jersk for it.... but they picked him up... and its possible they just wanted to focus on somebody with 3lite ^irus ski||s for gamma retroviruses ....

    think about it like this... if your the committee and you know there are going to be people there that found the virus and some that didn't (speaking at the conference)... you want the virus guy showing the newbies how to do the RIGHT pcr.... so if you can only stick a few people into the conference that found the virus the right way... you might pick him... and a cfs specialist from a different group.... to have a little diversity.... it does snub her... but if switzer is also speaking... they might just want to contrast his results/methods with Ruscetti and his wife's methods... that would be VERY useful to us and the researchers... it would show where Switzer made his mistakes.... i get the feeling the CFS patient selection thing is going to be something they look at later down the road... right now it looks to me they are more focused on finding the virus ....

    one day they will be far enough down the research road that they will be able to look back and say "yeah we should have been looking at CFS patients, with the right CFS definition long agol" but that has to come after they are sure they can accurately define the virus....this isn't a conference on sick people... its a conference on viruses that make people sick....

    from what i gather from watching ruscetti... they actually had identical results to the CDC and other failed experiments when they used the ENV protein... the same one the other experimenters used.... all he has to do is put up his little slide on the reliability of the different sequences they used to find the virus and they will see that they duplicated the cdc/fail experiments... and then devised a better solution.

    Ruscetti and his wife have been playing ... apparently... with MLV's for literally decades... Judy and others really focused on HIV, and HTLV ... which are somewhat different... different mutation patterns... different cells infected ... different immune mechanisms to mutate around....

    Judy's experience on viruses seems more broad... i get the feeling ruscetti had been playing in the gammaretrovirus sand box for about 30 years...



    i'm not saying she deserves this treatment or lack of treatment.

    i'm more concerned about the funding issue....

    she wouldn't come out and say it.... but they seem "concerned" over that more than anything right now....

    it seemed... and i could be wrong... that dr. mikovitz actually knew him on some level... and that their relationship was in part responsible for the newer building'/equipment..... they wouldn't say that explicitly.... but from what i gathered she did know him, and it seems that was the impetus for the funding....

    we need to focus on programming the new gov. bEFORE he takes office, that this is STILL a priority for the state....

    We need people in Nevada to help with this... its going to have to be his constituency.
  3. julius

    julius Watchoo lookin' at?

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    judderwocky,

    I very much agree with your approach.

    Activism and advocacy are extremely important, but can have negative consequences if done inappropriately.
  4. judderwocky

    judderwocky Senior Member

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    Its a chess game... sometimes they take the queen....


    I promise you we can get her back though.

    http://xmrvaction.org/content/all-eyes-nevada
  5. mezombie

    mezombie Senior Member

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    I was under the impression that a chunk of WPI funding was voted for by the state legislature. I recall trying to whip up some enthusiasm for writing to key legislators several years ago. The letters received, even those out of state (pointing out how people would travel to Nevada for treatment, thus spending money in the state during their stay, etc.) helped push the legislation through, according to Annette Whittemore.

    Anyhow, part of the WPI funding thus was incorporated into the state's appropriations law.

    Perhaps it's been spent already and you are referring to other funds?
  6. judderwocky

    judderwocky Senior Member

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    It sounds like the 12 million is appropriated through the bill... but they get an additional 77 million for the building from teh federal gov...and i think a lot of that may have been him flexing his arm in dc... and getting people on board

    realistically we just want the new governor to public ally acknowledge that he is going to fill in Guinn's shoes on this issue... we just need him to be aware that its still an issue...and he needs to deal with it and us pro-actively ...

    its an opportunity for expansion and programming... we need to educate this guy....

    its my understanding that the state is having financial issues and i think the new govenor might be looking to cut programs in teh next budget cycles.... WPI could be affected by top down moves like this from a new govenor.

    what we have going for us is this... guinn was liked because he was considered a good finance guy...

    we "spin" the cfs research as a part of this.... this will help to eliminate the additional medical costs of the disabled! whats more fiscally conservative of that.....

    if the new govenor wants teh same level of success as the old one, we tell everyboyd he neeeds to use the same strategy

    sorry about my typing... ive been working on the site and my fibro is spreading to myhands.... i;m gonna have to sign off soon :(
  7. George

    George waitin' fer rabbits

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    Hey Judder your first post was eloquent squared. Go J!

    I think a letter writing campaign to the new gov. is an excellent use of energy (big grin) It doesn't potentially hurt anyone and as stated above it emphasizes the potential cash flow to the state. I'm in for that.
  8. shrewsbury

    shrewsbury member

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    Hi judderwocky,

    Maybe you missed it, but it has been said a few times throughout these threads that Frickly and Kati had contacted Dr Mikovits to confirm that she had not been invited to speak at the conference before they took any action. So I'm not sure what is radical about you contacting WPI.

    I look forward to the press release.

    We didn't do this because we "want to focus" on something, we're already quite busy with our advocacy efforts while trying to maintain our health; we did it because we feel it is an important issue.

    I agree completely that working to ensure WPI's funding is a good project to be involved with.

    Who's who does get confusing.

    The workshop is co-sponsored by NIH and Virology Education (a private company)

    Actually, the keynote speaker is Dr Eric Klein who is from the Cleveland Clinic, not the NIH

    Prostate Cancer
    (keynote lecture) Dr. Eric Klein, Cleveland Clinic, Cleveland, USA


    None of the invited speakers are from NIH (the National Institutes of Health) . Dr Alter, of the as of yet unpublished FDA/NIH paper with the slide from the European conference that made it onto the net saying that they had confirmed the results of the Lombardi et al Oct 2009 Science paper, works for the NIH, but was not invited to speak. From wikipedia: Alter is the chief of the infectious disease section and the associate director for research of the Department of Transfusion Medicine at the Warren Grant Magnuson Clinical Center

    Mr William Switzer who was invited to speak on Assay Development works for the CDC.

    THe NIH and CDC are both separate agencies under HHS (the US Dept of Health and Human Services)

    The point we have been making is that this conference has not invited Dr Mikovits to be a presenter on how to detect XMRV, if not the keynote speaker. They have not invited her to speak at all. This is analogous to having the first polio conference and not inviting Salk to speak.

    ------

    ETA Mr Switzer is the lead author of Absence of evidence of Xenotropic Murine Leukemia Virus-related virus infection in persons with Chronic Fatigue Syndrome and healthy controls in the United States, Retrovirology 2010, 7:57doi:10.1186/1742-4690-7-57
  9. Forbin

    Forbin Forbin

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    It was former Nevada governor, Kenny C. Guinn (R), 73, who died yesterday after falling from his roof. Guinn was succeeded by current Gov. Jim Gibbons (R), in 2007.

    http://http://www.washingtonpost.com/wp-dyn/content/article/2010/07/22/AR2010072205638.html

    Former governor Guinn put funding for the University of Nevada's new Center for Molecular Medicine into the state budget. I don't know if it has another name at the moment, but they might want to consider The Kenny C. Guinn Center for Molecular Medicine.
  10. judderwocky

    judderwocky Senior Member

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    I agree with all that ... but in there minds this isn't a "CFS" conference because the link hasn't been causally proven yet... in there minds... not mine....

    what i'm saying ... is that in their minds they are about three steps behind where you are....

    I think from their perspective this is a "lets get everybody together and compare everybody's research notes to figure out what we are all doing wrong" ... yeah... she should be speaking... but in their heads... xmrv isn't yet synonymous with the XMRV virus.... right now they are still fighting over what they are doing wrong....

    i guess i'm thinking they see it more like this....

    while the CDC is tring to cover its bad past mistakes... i dont think they are so naive as to cut themselves out of the future research.. they know its out of their hands....

    EDit*switzer* getting to speak will allow him to address a lot of other apsects of finding a virus in the population... the CDC has been doing it for years and their issues with how to implement the study's that woudl make XMRV synonymous with XMRV... ie issues surrounding collection of specimens... maybe even what funding could be used for this sort of thing.... that would allow for future conferences of the type i think you are describing..... he has valuable information about what steps were done... just having him run through his research next to the people that did find it (in contrast to his own research) will be valuable for them.....

    switzer can speak to the capabilities of the cdc... what steps it will be able to take when such an xmrv test actuallly becomes available... when planning studies the scientists have to know things like... how many specimens they can get from where, how these things are done.... what samples the government arleady has on hand.... even if they didn't find the virus... they still have the machinery to and they have a history of tracking the kinds of geographical and morphological changes that are important to xmrv

    i get the feelign from the literature on their site that they are trying to to do exactly what we have been asking them to do ....

    get a representative from each of the groups together to give their side of the speech... it sucks that mikovitz is not in our corner... but they did what everbody has been blogging about... they got one person... more or less... from each camp to give a lecture... at the very least... Ruscetti will get to show that really awesome slide he had on how the Env proteins the other labs were using was /failresearch. ... his lab has focused on that sort of thing for years.. . he has the rep for that... so its very powerful for him to be able to stand up in front of all the other research groups doing this stuff and say.... "Look here, this sequence mutates too fast, we got the same results you did when we used that sequence.... the one you want is derived over here...."

    also... as to the National Cancer institute getting the keynote... frankly the research has been going on much longer , started by their teams, on prostate cancer....they have two years of xmrv controversy under their belt!

    in fact the guy that first isolated XMRV - altogether- doesn't seem to be speaking at all.....

    remember this isn't a cfs conference ... its an XMRV sampling buffet..... (lol or maybe more like a wine tasting... everbody spitting on eachother's research. )
  11. muffin

    muffin Senior Member

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    Conference is at NIH. Begs many questions? Federal building? NO NIH/XMRV Rep?

    http://www.virology-education.com/i...ation/vid/1FFA7DE5-A435-E0D1-6FAA93CE0CFE0124

    Invitation letters
    Official letters of invitation, designed to help overcome administrative difficulties in certain countries will be sent on request. They will be extended only to researchers and clinicians actively participating as investigators in the field of XMRV, with preference accorded to doctoral and professional degree level researchers and clinicians. [/B]((Wow, Switzer only has a Masters in Public Health and not any sort of science/medical degree - what gives with this one?)))
    The letters will be sent only after full payment of the conference fee. The letters do not represent a commitment on the part of the organization to provide any financial assistance. Delegates who wish to apply for an invitation letter should contact the conference secretariat. All letters of invitation will be sent by fax unless otherwise requested.

    Meeting Venue
    National Institutes of Health (NIH) This is a FEDERAL building. Federal money supports this even if this org has paid a fee to use the facility.
    Lister Hill Center Auditorium
    first floor of Building 38A
    10 Center Dr
    Bethesda, MD 20814
    United States

    Organizing Secretariat
    Virology Education
    Bilstraat 106
    35872 BJ Utrecht
    phone +31 30 230 7140
    fax: +31 30 230 7148
    email: info@virology-education.com
    ==================================================================================
    http://www.virology-education.com/in...AA93CE0CFE0124

    the "1st International Workshop on XMRV: Pathogenesis, Clinical and Public Health Implications". This workshop will be held on September 7-8 this year at the National Institutes of Health in Bethesda, Maryland, USA..
    The objective of this scientific conference is to assemble an international group of scientists, physicians and epidemiologists to present and discuss, in a public forum, the latest XMRV studies on a range of topics including virus-host interactions, cell type tropism, mode of transmission, animal models and the efficacy of current antiretroviral drugs.

    This meeting will offer an interactive setting where the latest developments in the field can be presented in order to evaluate the state of our knowledge, address controversies, and develop an understanding between experts that will help direct future research.

    This workshop will be co-sponsored by the NIH and will be organized by Virology Education.
  12. SOC

    SOC Back to work (easy, part-time work)

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    Ah, thanks for that explanation, Judderwocky. So there is some method in their (at first glance) madness.
  13. judderwocky

    judderwocky Senior Member

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    don't think so... it looks like you need id to get in.... like one of their badges and you only get a badge after registration confirmation... not a bad idea though... i mean if you have two people that had different results giving lectures to the same group of people i can imagine you would want that to be private... i mean yeah .... we would love to be a fly on the wall in that conversation.... but they will be more open about their criteria, selection methods, pcr , etc... if they know its only their peers listening.


    also been reading up this govenor situation ... it looks like guinn was the one that secured the original money for the WPI.. in 2005 - he was a friend to the whittemore's, after his term ended he's apparently still been doing stuff behind the scenes... he was apparently VERY well liked all over the state ... and considering the troubles the republican party was having recently... had he lived longer... he probably would have been heading up the chain of command even further... he was exactly what they needed... a relative moderate who presided over a lucrative time period in a profitable state ... given the current affairs in the media ... the conomic downturn... the other other issues republicans were having... he would have been perfect either as the first or second guy on a presidential ticket....im sure you could imagine what they would do with someone like him come the next election cycle...

    i get the feeling it was kinda his reputation keeping the funding up... the current gov hasn't really done anything on CFS it looks like.... now that Guinn is no longer carrying our mantle, he needs to pick it up~!

    without somebody to gaurd the funding... somebody with the clout that guinn had... gibson might sacrifice the state funds in the next legislative session.... whats more...

    what about the federal funding? can gibson even pull the same strings that opened that kind of stuff up? i dont know dollar figures for how much he was repsonsible for... but i know he had some sort of impact and right now every dollar seems to count.

    if gibson is on our side... IF.... then he can demonstrate it by taking this a step farther....

    i mean... here is the issue... the WPI did this amazing research cuz they had good funds... that they secured through federal and state levels... if it was his power keeping those funds in place... who else can do this? if there is already a predjudice against this research at the federal level, he might have been the only reason the WPI was getting any federal/state funds to begin with you know? maybe the cats out of the bag and the funding on XMRV issues is going to go through across the board....

    but.... there is no reason they have to fund the WPI to do this research... they could just as easily decide the CDC should get all those funds and let them do all the XMRV research or the NIH or any other gov agency....

    i am really concerned over the role he had in making sure that the WPI was able to get this funding.... and i wonder who will get these types of grants if his presence isn't there....

    any ideas?
  14. Frickly

    Frickly Senior Member

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    Yes, Thank you Judderwocky. What would we do without your words of wisdom and clarity.

    "remember this isn't a cfs conference ... its an XMRV sampling buffet..... (lol or maybe more like a wine tasting... everbody spitting on eachother's research. )" Really?

  15. muffin

    muffin Senior Member

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    Originally Posted by judderwocky
    "EDit*switzer* getting to speak will allow him to address a lot of other apsects of finding a virus in the population... the CDC has been doing it for years and their issues with how to implement the study's that woudl make XMRV synonymous with XMRV... ie issues surrounding collection of specimens... maybe even what funding could be used for this sort of thing.... that would allow for future conferences of the type i think you are describing..... he has valuable information about what steps were done... just having him run through his research next to the people that did find it (in contrast to his own research) will be valuable for them.....

    switzer can speak to the capabilities of the cdc... what steps it will be able to take when such an xmrv test actuallly becomes available... when planning studies the scientists have to know things like... how many specimens they can get from where, how these things are done.... what samples the government arleady has on hand.... even if they didn't find the virus... they still have the machinery to and they have a history of tracking the kinds of geographical and morphological changes that are important to xmrv"

    MUFFN::::: Let us just see what exactly Switzer says about the CDC/XMRV assays at this workshop. If he sticks to his field of Public Health, fine. But, if he goes near real science on XMRV and the assays, then we have a problem and KNOW what the game is - more evidence.

    We need to get into that conference. The media needs to be at this conference. It can not be closed to the public/media. Transparency in government - not seeing much of it with the Fed health orgs...
  16. judderwocky

    judderwocky Senior Member

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    --- i;m having somebody look over my article on xmrvaction.org....--- so it doesn't conflict with certain people's interests and what not hint hint ;p
  17. taniaaust1

    taniaaust1 Senior Member

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    "giving them the virology and PCR tools to help them identify the virus in various cohorts."

    I think the fact that the Assay Development section of the talk is being given by Dr. William Switzer, CDC, is putting people on edge too. Its hard to understand WHY??? the CDC should be talking on Assay development when they cant even find XMRV at all. http://www.ncbi.nlm.nih.gov/pubmed/20594299
    "CONCLUSIONS: We did not find any evidence of infection with XMRV in our U.S. study population of CFS patients or healthy controls by using multiple molecular and serologic assays "

    Its like getting someone who lives in the slums of Ethiopia to give a talk on being wealthy.

    Yes someone here did email her and communicated with her.. and she was not even invited to talk there.

    It does make it look like WPI is being pushed out and everything being put into the hands of government depts. (who history has shown us.. we cant trust the government as far as CFS goes.. eg stolen CFS funding, stupid CFS definations and all the other crap they've done). We NEED her to stay in the picture at the front.. as she's the only one many with CFS will trust who wont turn against us in some way... we dont want her sidelined. (Till the USA cant even get their CFS definations right or make recognisable subgroups.. how on earth are we trust them with research etc or with doing the right thing by us).

    Once side lined and swept out of the picture (overshadowed by government depts)... how is one meant to get back to a good place of recognition. I myself want to make sure the WPI gains recognition as CFS patients need this and they will not let us down. So to me.. the start of being over shadowed could lie in the very first XMRV conference.

    (im not in scienctific fields..so i speak as a typical member of the public).
  18. taniaaust1

    taniaaust1 Senior Member

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    Yeah.. she's currently percieved bad by some for what?? Her very presence symbolises all the contraversy which goes on around CFS. I dont think there would of been any contraversy really about her if she had been studying a more popular field.

    She needs to be able to come out into the light and be able to shine for us all. Keeping contraversy hidden like a dirty thing dont ever fix it.
  19. judderwocky

    judderwocky Senior Member

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    I think the thing with switzer is they definitely need to know how he conducted his experiment....

    there are so many un answered questions right now....

    switzer actually does have some experience looking at retroviruses moving across into humans ... and he has tracked a number of strains.... they could legetimately want his input on that...

    i think the key here is that the scientists want to hear from everybody ... especially the failures....
    if i were a researcher and i knew there was a virus out there that some groups were finding and others were not... i would want to know what NOT to do as much as what to do.

    I can definitely see why this puts everybody on edge.... it puts me on edge somewhat... buti also know the only way they are going to flush this all out into the open is for them to all get together and has it out....

    Ruscetti gave a very long talk to those emory med students on XMRV and he explained what he believed a lot of hte PCR failures inovled... I think he really just needs put up his slides on the sequences .... im sorry they have taken access down tot he video or i would show you....

    anyway he basically put up a whole bunch of data from other labs and showed that when they used jsut the env protein that they got the same results as the fail groups... like 1 or 2 out of hundred......

    they will go to his lecture and figure it out pretty qiuckly....

    the scientists will be smart... these things have to progress....

    I mean lets look at the underlayere to this comittee... they have directly paried several research groups that found the virus against those that have not... clearly they are trying to make people talk about it

    i think thats a good thing, and i think its what we all wanted... i would have liked to see her there... but honestly , i mean to me it looks like they just went through the list of groups and picked one from each.... let everybody testify in court sort of a thing.... it gives everbody's side to throw up some of their highlights ... not all the hard hitters from each side will be speaking ... but cfs is at the table and that is kind of actually rare for us.
  20. taniaaust1

    taniaaust1 Senior Member

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    :) i do hope you are right.

    I really wonder if Switzer will admit he was wrong. It takes a very big man to do that and many wouldnt. He's probably going to have no choice in the end but to do so. (CDC damage control)

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