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XMRV Vip Inconclusive

Discussion in 'XMRV Testing, Treatment and Transmission' started by hensue, Dec 2, 2009.

  1. Kati

    Kati Patient in training

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    People are anxious- that's for sure= you send a bunch of kids in a candy store, you will see the eyes go as round as quarters and drooling!

    Everyone wants out of this disease (including me) the faster the better/ Unfortunately it doesn't necessarily work that way.

    As nxious as I am to be tested- maybe it wouldn't hurt to give scientists a litle space to cosolidate their findings and come up with solid testing and treatments?

    I am the most impatient patient in the world. Still I need to think twice before i give 650$ for a test that may not be valid. A negative test would certainly make me wondering, considering I am slipping deeper into the "bedridden" subtype.

    WAiting for answers, wouldn't it be better to see what other co-infections affects us?
     
  2. Hiya. This is interesting. Thinking about this for a while, people can be well and XMRV+ Just like people can be HIV+ and well. So why is this doctor worried about false results? I mean if positive patients can get many other tests alongside XMRV, then this is good. Perhaps they are worried about people not doing that?

    It's a valid point of concern, but I don't see the issue personally as VIP have made clear it's a research test and not clinically validated yet.

    The antibody test will be the one doctors should worry about not being accurate about in 2010, the one that will need to be accurate, and the moment we're just playing around in the laboratory as it's very early days.

    I guess there are misguided and/or over excited patients who will declare with one preliminary test they are this or that due to XMRV, but anyone who reads the research or website, can quickly learn we are just part of an experiment here to fine tune the test, surely? Albeit to a well meaning non-profit organisation - the WPI.

    If my XMRV is positive then it's not false positive, as I have NKC dysfunction, low T-cell and RN-aseL dysfunction along with tissue damage caused by oxidative stress. (All due to immune activation). Dysautonomia, Osteoporosis, the works. It's obvious I have it, and XMRV is claimed to cause it.

    I appreciate I'm rare, few people spend their life savings, (or parents can/do) to go to such lengths to 'check' you have what you think you have.

    I guess this doctor you mention, they are worried people with one single test, will thing they are something, that might not be?

    Like my illusions of being funny for example. .... :p
     
  3. gracenote

    gracenote All shall be well . . .

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    not a one-test-doctor

    No worries, CTOT. You are funny. I may not always get your humor, but I see it as humor, none-the-less . . . most of the time . . . :)

    I doubt, I truly doubt, that this is a one-test-doctor. My best guess would be, considering my source, that this was intended as one of many, many tests. I think the concern over the potential "false negative" is if the test has any meaning at all. Why run the test if you can't trust the results?

    By the way, I think I am "something" even without the test. :D
     
  4. Alice Band

    Alice Band PWME - ME by Ramsay

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    Wildaisy,

    The VIP is now accepting bloods from Europe. A person with ME in London is arranging testing through a lab there. First lot of bloods will go on Monday the 7th.

    I'm booked in for the 14th December.

    It just took a bit of organising.

    No reason why other Euro labs could not get the same arrangement. The bottleneck is at VIP with a long waiting list for test kits though.

    The Breakspear hopital is sending off a "test" batch of bloods this month as well.
     
  5. Katie

    Katie Guest

    Alice, can you give us some more information on how to part of these groups? Or do you have a link? I don't quite understand what is going on.

    EDIT: Ok, I found the site, I remembered the link from the Europe test thread. Just having a look now. Anything else you can tell me would be appreciated.
     
  6. Alice Band

    Alice Band PWME - ME by Ramsay

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    Katie,

    So far there are two test dates organised for a central London lab. Monday 7th December (may be booked out) and the 14th December.

    The bloods will go to VIP dx in Reno via an overnight courier.

    VIP are only offering the double test now (USD650). The lab will charge 55 for blood collection, courier etc.

    Send an email to the organiser if interested

    contact@xmrvtesting.co.uk

    There may be more dates before and after Christmas if VIP will allow this. This is just an endeavor by a London ME support group to get things going. VIP have agreed for a limited number of tests only.
     
  7. ABarker

    ABarker Guest

    I think this goes much deeper. Does anyone know who owns VIP Dx? The press release was cleverly worded...

    After the initial Science publication came out on October 8th, many with ties to WPI stated that the 101 CFS cohort included samples from Dr. Peterson's Bio Bank repository. About 3 weeks ago, the WPI changed their website, now stating that none of the original 101 samples came from Peterson's Bio Bank, and that they all were collected between 2006-2009. It states:

    "Dr. Daniel Peterson understood the promise that a historical bio bank could bring to scientific understanding thus he began collecting and storing patient samples in the early 1980's. However, it is important to note that no samples from this historical bio bank were used in the Institute's XMRV studies." http://www.wpinstitute.org/research/research_biobank.html

    So they clearly state that none of the 101 samples were collected before 2006, and that none were from Dr. Petersp's Bio Bank. In addition to this, on the same page of the WPI website, there is a section entitled "FAQs about the Whittemore Peterson Institute Bio Bank". It states that for the original XMRV study:

    "All samples were collected from 2006-2009, under the WPI's research department with signed patient consent forms."

    They also address the issue of lymphoma, stating that:

    "Blood samples from the WPI repository were chosen at random and there were no patients chosen with lymphoma or mention of lymphoma in this study. Another preliminary study was done at a later date that had nothing to do with the XMRV Science publication."
    http://www.wpinstitute.org/research/research_biobank.html

    Peterson's slide-show from his October 29th CFSAC presentation was available in paper format; it is 5 pages long, with 5 slides per page.

    On page 5 of the original XMRV Science study published on October 8th, 11 samples representative of the CFS patients that were assayed for the GAG are marked as group "A", and appear on the left of the page. Of theses 11 patients, the 7th from the left is represented as "WPI-1125". In Peterson's presentation, page 1, slide 5 is similar to the GAG assay results from the original Science study, marked group "A". It is difficult to read, but on this slide, the 7th from the left in group "A" is also identified as "WPI-1125" -- the same patient as the Science article. On this slide, it also clearly indicates that these 11 samples are part of the 101 patient CFS cohort. This is represented at the bottom of the slide, by the "68/101 (67%)".

    On page 5 of Peterson's presentation, the 2nd slide of the page (22nd overall), is titled, "WPI-1125 CFS Diagnosis One Decade Prior to MCL". In this slide, patient "WPI-1125" is again identified as part of the CFS cohort. Furthermore, it includes a timeline of his illness:
    • 1988 -- Seen at NIH for CFS
    • 1998 -- Splenectomy to decrease aggressiveness
    • 2000 -- Seen at NIH for mantle cell lymphoma. Given Rituxan and Velcade.
    • 2004 -- BMT with adult stem cells
    • 2008 -- Blast crisis MCL ... death

    During his presentation, Peterson stated that they had went back and looked at samples from his Bio Bank since the original Science publication, and I don't doubt this. However, the initial Science publication clearly shows that patient "WPI-1125" was included in the original 101 CFS cohort. In addition, it was clearly known since at least 2000 that patient "WPI-1125" had lymphoma. The statement on WPI's website about all of the 101 original samples being from 2006-2009 was only posted to their website approximately 2-3 weeks ago. At that time, the statement that none of the original 101 samples had lymphoma was posted to the WPI site as well.

    The WPI site states that: "Another preliminary study was done at a later date that had nothing to do with the (original) XMRV Science publication." -- however this clearly contradicts the inclusion of patient "WPI-1125" in the original study. Like I said, I don't doubt further sampling has been done, but it is blatantly obvious that something is not right here...

    "WPI-1125" is also mentioned in the "Supporting Online Material" published by Science on October 23rd, but the same sample WITH lymphoma, and FROM Peterson's repository WAS included in the original 101 cohort...

    This is the only patient that I have spent time looking into -- I don't know if other samples from the original 101 CFS cohort had lymphoma, or if they were from Peterson's Bio Bank, and not from 2006-2009, as WPI claims...

    The original Science publication from October 8th, as well as the "Supporting Online Material" published by Science on October 23rd are easy to find. Dr. Peterson's slide-show is public as well -- I tried to upload it here, but the file is too large.
     
  8. dannybex

    dannybex Senior Member

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    It's not clear, but Dr. Lombardi is the 'Director of Operations' and it sounds like the Whittemores have have helped fund it over the years.

    More on this thread:

    http://forums.aboutmecfs.org/showthread.php?t=917&page=2
     
  9. leaves

    leaves Senior Member

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    inconclusive=broken sample

    Hey all,

    So my sample was also "inconclusive". I thought of all different kind of scenario's, but reality is always more entertaining:

    After a bit of poking around I found out that they actually managed to break my sample; it fell on the floor, LOL.

    So they had to extract again, etc, and will have results hopefully next week.

    Maybe the same happened with your sample? Would hold the worries at least :)
     
  10. leaves

    leaves Senior Member

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    uhuh

    yeah and they told me they would get results within 2 weeks and its now 6 weeks, after having broken several (self-imposed) deadlines. Rather tell me 6 weeks and skip the disappointments.
    I guess the thing that is going on is that they are a small lab, not used to this amt of testing and organization and a tendency towards chronic optimism. I do believe their testing methods are reliable, but for the impatient and anxious patient like me, dealing with this is not a pick nick :)

     
  11. alice1

    alice1 Senior Member

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    I hope you get an answer to your inconclusive results asap.How frustrating.
    I live in Canada and recieved an email 2 weeks ago saying they were sending kits north of the border and it would take about 4 weeks..we'll see.But I'm having second thoughts about spending this kind of money if this is the reply I may get( inconclusive).Nora you said that people haven't been getting replys,does anyone know if one person has gotten a positive from this test?
     
  12. leaves

    leaves Senior Member

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    Well I dont think they will make it a habit, throwing samples on the floor, so I think you are safe with respect to the "inconclusive" domain. You will get either a "positive" or a "negative" .
    The question is how reliable the "negative" is.As it seems this testing method may have 67 % accuracy, worst case scenario. ANd you will have to wait for quite a while before you get the results. If I were you I would wait, and see how this XMRV thing turns out, it may not turn out to be the holy grail, and if it does, I am sure more professional and cheaper testing methods will become available, probably quite soon.

     
  13. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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    Well, its possible they promised tests to England a long time ago
     
  14. leaves

    leaves Senior Member

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    to be patient...

    I also have the idea that I am not their nr 1 priority; the breaking of the sample happened several weeks ago. People that were tested later than me already got their results. They probably want to increase their market by going international, and therefore make these promises. Since you are wait listed, and I have even paid already, we may not be on top of their priority list. Or it is just chaos over there, and it is some random mechanism that determines who gets tested first. We will get the test eventually though..
     
  15. Kati

    Kati Patient in training

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    I can't agree more, Levi- and Wildaisy I can understand your frustration, because I am also very frustrated, and want the whole world to know about XMRV already. I am tired to wait at home, and sometimes it feels endless and hopeless.

    I am sure they are doing the best they can. And I am sure they are processing the requests in order that they've come.

    Let's be thankful we're not sending our blood to the CDC..
     
  16. Cort

    Cort Phoenix Rising Founder

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    Actually 3 out of five people have tested negative for an active infection (PCR) test. 1 person at Cooperative Diagnostics also tested negative.

    Its way early though. Hopefully they'll get those tests done and people can see their doctors and the results will come swarming in.
     
  17. Cort

    Cort Phoenix Rising Founder

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    I think Levi's right.

    Remember that talk at the University of Pacific about 6 weeks ago by Dr. Mikovits? Staci Stevens said it was a long talk and that it went way beyond what we'd heard. The WPI asked them to hold off on posting it until Dr. Mikovits gave a talk at a Scientific Conference. She gave that talk but the video was embargoed again. Too much new stuff apparently - the video won't go out until some papers are published - which means a long time.

    Its probably the smart thing to do but it suggests that they're being a bit more careful with their public utterances.

    (What does Hilary Johnson's latest diatribe about the CAA have to do with a discussion of VIP Dx lab results?)
     
  18. fresh_eyes

    fresh_eyes happy to be here

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    But, Levi, what do you see as the benefits of waiting it out quietly?
     
  19. anne

    anne Guest

    (Cort, Levi said we hadn't heard a peep from Hillary Johnson. Wildaisy found the peep!)

    And I agree that the WPI is putting their heads down and getting back to work. There's no news until there's news.

    With respect, Levi, I think the Oprah/ New Yorker talk is perfectly appropriate. There are great stories to be told--the Whittemores' story is perfect. And the story of the government and CFS is--taking the personal out of it--fascinating. The very notion that because the disease can't be easily quantified it's been turned into a mind body problem says a lot about our medical culture. And its worth looking into the reasons this illness has been degraded and ignored--I mean, I know you don't disagree with that, but I'm saying it's worth looking into, philosophically, that it would make a good NYer style essay. There are good stories to be told, and because of the XMRV news they are suddenly topical.
     
  20. Kati

    Kati Patient in training

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    LOL Wildsaisy re CDC and court order! ME too!!!

    I am awaiting for a test kit from them, have been delayed a couple times ( they eah time said they were short in supply) and not totally sure at the moment if I want to be tested yet- I mean it would be nice to have antibdy testing. In the meantime I would like to get the herpes group viruses checked out ( I haven't been tested for anything at all) and also need to be tested for Lyme.

    I was checking the symptoms of Lyme Disease against CFS and there is major overlap. And I hear only 30% of the Lyme patients have had the bullseye rash- Comments on that?

    I am super super frustrated at the benign stigma CFS has within the dr population- unreal.
     

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