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WPI and XMRV - Myths, Facts, Questions and Opinions

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Mark, Jun 15, 2010.

  1. Mark

    Mark Former CEO

    Sofa, UK
    Boy, George...

    ...that's awesome! I had completely forgotten the case was so strong on this one! This is gonna be a breeze!...

    I'm going to proof it in this post and edit it here so you can more easily compare the two and continue to edit; I'll put what I have so far into post#2 as well. Comments/queries in red. Style I'd like to aim towards is as terse, matter of fact, to the point as things will get trimmed a bit, but without losing any significant content. Here goes...

    MYTH: The WPI has been irresponsible in the way it has encouraged patients to pay for XMRV tests, even though the relevance of XMRV is, as yet, unknown.
    ["patients" and "pay" were my words, what would be more appropriate? Would be good to get an actual quote for this myth - ERV may be able to oblige...;)]

    1. No member of the WPI has ever made a statement asking, encouraging or soliciting ME/CFS "patients" to "pay" for XMRV testing, but has instead encouraged patients to join studies. ["never" had better be true, or one referenced quote to the contrary would undermine the whole FAQ...]
    2. XMRV testing will inevitably be offered by some private lab regardless of what any group or agency may want. The WPI released their test in response to the release of a test by Co-Operative Diagnostics Ltd.
    3. Laboratories offering testing will of course charge for testing to cover their expenses.
    4. A significant subset of the ME/CFS patient community is both ready and willing to pay for testing, in full knowledge that the WPI's findings have not yet been independently replicated.
    5. Providing WPI-licensed testing discourages other companies from offering over the internet tests that may or may not be consistent with the WPI methodology for detecting XMRV in ME/CFS patients.

    Dr. Judy Mikovits (Director of Research at WPI) has repeatedly told lecture audiences to wait, and to sign up for studies in order to receive free testing in a controlled environment. Other members of the WPI staff - including Dr. Daniel Peterson, Annette Whittemore and Dr. Vince Lombardi - have also encouraged members of the patient community to enroll in studies until more information becomes available about the virus itself and whether or not the virus is truly associated with CFS. [Would be cool to have some references or quotes on this].

    Dr. Coffin and Dr. Peterson discouraged individual patient testing at the CFSAC meeting on October 29th 2009, as did Dr. Nancy Klimas in her review of XMRV on November 7th 2009 (read more). Dr. Klimas encouraged patients to participate in studies but discouraged patients from testing privately.

    On October 26th 2009 Cooperative Diagnostics [Ltd?] (a private company not associated with the WPI) put out a press release and began offering an XMRV test kit (read more). This move seems to have prompted the WPI to quickly license its research test methodology to Viral Immune Pathology Diagnostics Laboratories (VIP Dx) but Cooperative Diagnostics was the first company to offer a test to the general public.

    On learning of the Co-operative Diagnostics test, Cort Johnson contacted the WPI in an effort to find out whether the WPI would offer testing to the public. He posted this response on October 26th: (read more)

    Two days later, on October 28th, VIP Dx made available on their web site two tests: a PCR test and a culture test. (The testing acceptance was made retroactive [?? "retrospectively dated ??"] to October 23rd, which created some confusion as to who actually made the test available first. (read more ) ). A statement from the VIP Dx web site indicated that VIP Dx were orientating the test to the physician:

    In January of 2010 a new lab called Clongen Laboratories began offering an XMRV test (read more). To date no one has used this lab that I know of and no results are available on their web site.
    [Might want to cut this bit on Clongen, not directly relevant to the question and the tighter we can make this FAQ, the better it will be]

    [My additional concluding remark follows...]

    Further comments:
    Many patients find it extremely patronising to be told they are being exploited by the WPI and should wait before more information is available before testing for XMRV. Patients aware of how to obtain a test for XMRV are also fully aware of the situation regarding the research and the fact that the WPI's findings have not yet been replicated by a second research team.

    Through such tests, UK patients in particular were able to confirm that the WPI's tests do indeed indicate the presence of XMRV in ME/CFS patients in the UK - contradicting the suggestion by Prof. McClure and others that the discrepancies between earlier studies may indicate that XMRV is not present in Europe. This patient-led finding has made a very significant contribution to the early debate about the potential implications of WPI's research.

    Indeed the reporting of such findings in the national press are a sign of the revolution in patient-led research that is represented here. After experiencing decades of failure by the scientific community to undertake biomedical research into their illness, many ME/CFS patients are frankly not terribly interested in being told that they ought not to use their own money to seek the answers they are denied by traditional authorities. If members of the medical research community want to blame anyone for this modern phenomenon, perhaps they should look closer to home.

  2. Lynn

    Lynn Senior Member

    Hi Mark,

    That is a genius idea. Thank you Gracenote. In fact I think it has solved the problem that I had with the statements. If you put Myth or Rumour or some word in front of a statement, it diffuses the statement. Much the same with questions. I think it would be good that when writing about or refuting these statements that they are always preceded byt the FACT or MYTH designations. That way, we aren't putting out statements that at first glance look like we are trashing the WPI.

  3. Robyn


  4. Anika

    Anika Senior Member

    Thread, and Separating Facts, Myths, and Opinions - great idea!

    I think your idea to do this is great, Mark. Thank you!

    Skimming through, it sounds like you had already incorporated Gracenote's idea on Fact vs Myth, which is one of those obvious-in-retrospect, genius ideas (thanks, Gracenote!). And noting the Opinion areas is important as well.

    Actually, as I read, I wondered why the thread wasn't titled more along the lines of "WPI and XMRV - Separating Fact, Myth, and Opinion." I can see why "defending" is what we feel like - but I think if it's structured to separate fact from myth, a title that reflects that will be more powerful, too. I think the idea is that we aren't just trying to "preach to the choir" but to attract and inform people who are new to the issues and seeking to make sense of a lot of conflicting or confusing statements.

    Much appreciation to all of those who are already pulling together the pieces of this, including George and Lynn, and others who I may have missed. I won't be able to provide any organizational help for a while at least (this summer it's a challenge to get my "forum" time at all), but perhaps can provide some fill-in help later on.

  5. Mark

    Mark Former CEO

    Sofa, UK
    Thanks Anika, good idea, I've changed the title.
  6. muffin

    muffin Senior Member

    Great Idea!

    After the answers are written up and then scrubbed they can be used for responding and refuting by all of us when stupid articles, comments, blogs come out. We have standard, pat SMART answers to respond with consistently. This helps with our "united front" on the issues surrounding CFIDS/XMRV.

    Really great idea. We also need to have links to documents, cites, etc. when possible. Real medical journals with the hard core medical data and conclusions are hard to refute. This would take care of the idiot laypeople quickly (ERV, that brilliant grad school kid, comes to mind).

    Again, smart thinking and great work out of the really brilliant minds on this forum. Many of you are more expert than the so-called experts on many of these topics. You all blow my poor, damaged little mind!
  7. George

    George waitin' fer rabbits

    South Texas
    Mark those edits look good to me too. Also I think that I need to change the (read more) links to blue so that it will be more evident that they "ARE" links. (grins) I'll do the edits, find the reference and get it back to you by Monday. At which point I call dibs on . . .

    Lots of studies in the past have found associations between viruses and ME/CFS. Those studies never came to anything, why would this be any different?

    (big doggy grins)
  8. Victoria

    Victoria Senior Member

    Melbourne, Australia
    Just want to thank Mark for this brilliant Thread idea (& to extend thanks to all the others who are assisting).

    99% of the news & research about the WPI & XMRV I have not read, as I find it too overwhelming & lengthy. And half the time I have no idea who's who & what's what, so for me, this thread is extremely valuable.

    Thankyou very much, to all.
  9. dannybex

    dannybex Senior Member

    Ditto...excellent idea...

    ...Mark, and many excellent suggestions/comments in this thread. Will be great to help clear up the confusion as much as possible, and have it all here in one section.

  10. glenp

    glenp "and this too shall pass"

    Vancouver Canada suburbs
    You are awesome.

    Soreeeeee I would offer to help but you'd have too much extra work afterwards

  11. Mark

    Mark Former CEO

    Sofa, UK
    I've filled in quite a bit more in post #2 already, and given my take on this question already. But I'm sure you'll have more points to make and references are needed throughout.

    By the way everyone, these things don't have to be presented fully formed. It would be nice to get a lot of little sniippets of responses from various people and construct some of the arguments together as well.

    glenp, and anyone else who feels the same way, or who has thoughts or feelings about the questions but is feeling nervous or inadequate to express themselves, but may have a helpful argument to make that I hadn't thought of - or even a personal take from someone who finds some of the "opinions" patronising (which, personally, is what I think they are) - all contributions are welcome, and I will try to take everything into account. Even if they may not all get into the core document we can link from it to a page of forum members' comments, or appendix, or wiki section, whatever format it ends up in.
  12. coxy

    coxy Senior Member

    Hi everyone,

    i would like to make a HUGE point that XMRV is nothing to do with HIV i.e a MYTH MYTH MYTH!!!!!!!!!!

    One of my biggest concerns and this must be shared by many, is that if xmrv does happen to play an important part in the cause of me/cfs the media are going to get hold of this very quickly & the headlines are going to read as though it's linked to HIV just because they are both retro viruses.
    Quite a few of us on the forum have children with me/cfs as well as ourselves, quite a few of those ill children are either still able to go to school part time or have healthy brothers or sisters that are at school, can you imagine if the headlines read in that way, other parents or schools arn't going to know how to react to the children they know are from families with me/cfs. It could cause a nightmare situation for us all!!
    There have been so many discussions on the forums about xmrv & hiv we are almost making it look like there is a link, especially to any journalist with no knowledge who starts to scan the internet for info if any of the current research comes to anything. I feel like we are really unprepared for what may happen at any point now, it's very scary to me anyway.
  13. Sing

    Sing Senior Member

    New England
    Thanks so much for this positive offering, Mark. It is very helpful now. The strong, enthusiastic responses here are great too.

    What I particularly want to highlight is the importance you give to a thread's staying on topic. I sure agree with that. And I have no objections to you as a Moderator to keep it so, and maybe other people who start threads will also be able to exercise this control in some way, but for now it is a voluntary thing. To me it is part of respect and being a functional group.

  14. Mark

    Mark Former CEO

    Sofa, UK
    This thread doesn't seem to have acquired much information over the weekend...perhaps if I bump it someone will notice, and help out with some links and info to answer the questions in post #2...
  15. Gemini

    Gemini Senior Member

    East Coast USA

    Didn't know where to post this information from the WPI web site.
    Apologize if it's already been posted or if it belongs in another thread.

    June 14, 2010: Dr. Judy Mikovits presented a scientific lecture to 75 students at the Cardiovascular Research Center and Summer Research Internship Program (SRIP) at the University of Virginia on June 7th, 2010. Joel Hockensmith, Associate Professor of Biochemistry & Molecular Genetics and SRIP Director for the University of Virginia School of Medicine wrote to Dr. Mikovits thanking her for her exciting presentation. "Your enthusiasm for research and hypotheses was infectious as evidenced by the fact that not one, not two, but more than half a dozen students were still waiting to talk to you more than half an hour after the seminar. Kudos to you for stimulating such a diverse group of individuals." wrote Dr. Hockensmith. This is just one example of the many ways that Dr. Mikovits continues to educate and motivate future scientists while also encouraging novel research into neuro-immune diseases.


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