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WPI UK XMRV testing/study

Discussion in 'XMRV Research and Replication Studies' started by JAS, Mar 5, 2010.

  1. willow

    willow Senior Member

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    East Midlands
    Hi ukxmrv,

    Thank You!
  2. Gerwyn

    Gerwyn Guest

    i thought exactly the same thing but I have been accepted as well
  3. sproggle

    sproggle Jan

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    Mermaid and Gerwyn that's great to hear you've both been accepted! :victory:

    I'm also in the study &awaiting instructions, it's good to know we can all support each other here :hug:

    I did email Judy the other day asking if I could have blood drawn at home after hearing others had been told they could &also asked if we would get a questionnaire to complete to specify the cohort. I know she's snowed under, if I get a reply I will post here immediately for all to see.

    She's defintiely working extremely hard on our behalf!

    Go Judy! :thumbsup:

    Jan xx
  4. JAS

    JAS

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    I agree with UKXMRV, please can we just hold fire sending any emails to Dr Mikovits for now, I do believe we will get to know any necessary details as they become available. Meanwhile, I think we should just give Dr Mikovits the time and the space to put this study together. Thank you x
  5. flybro

    flybro Senior Member

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    pluto
    Right, its official I'm sulking, I hav'nt heard :( .

    Good job I'm having a pretty good run at the moment, otherwise I would be mega sulking.

    Fingers crossed for everyone, and I hope this will finally put XMRV squarely in the UK population of ME/CFS, and make it impossable for the UK to ignore.

    I'm so excited about this study.
  6. Esther12

    Esther12 Senior Member

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    I've not heard back either. I only sent one e-mail though. I'm not desperate to be part of a study, unless it would be helpful. Knowing whether I have XMRV doesn't seem important at the moment, but I'm certainly interested in the study.

    I hope they do it blinded and get results out soon. It shouldn't matter if patient selection was a bit odd so long as there's significantly more positives coming from the group of self-reported CFSers. I really want some more peer reviewed results from the WPI - they seem so confident in their data, and it would be good to know if that's really justified.
  7. ukxmrv

    ukxmrv Senior Member

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    Lots of people on different ME and CFS say that they have not heard. The message from Dr Mikovits was that it is going to take time for her to work through the list and reply.

    She has replied to someone I know to ask for no more questions or repeat email messages as it just gets worse. She said that she is trying to accomodate everyone but it will take time to work out the dates, times and places.

    Very sorry for everyone waiting to hear. The waiting was the worst part of the testing for me.
  8. flybro

    flybro Senior Member

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    It's OK ukxmrv I'm not going to e-mail again, I feel quite bad that I sent three emails already. It was like trying to construct a CV for CFS/ME in half a page.

    Thanks for being here.
  9. Koan

    Koan Be the change.

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    Oh Flybro, I was so hoping this would say something else. Ah well, let's pretend you don't actually want to get tested anyway.

    Testing is for sissies!
    ;)
  10. bullybeef

    bullybeef Senior Member

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    It has been noted on Facebook that the WPI have now received enough names for the UK research study. However, there are many people she hasn't yet replied to, so you may still received a response in the next few days.

    Good luck all.
  11. bullybeef

    bullybeef Senior Member

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    Email advice from Dr. M

    Hi guys,

    I recieved the following email from Dr. M and I was given permission to repost:

    The good news is if anyone has a questions or worries, she did say she would be happy to answer them.
  12. Lesley

    Lesley Senior Member

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    Southeastern US
    Bullybeef, I posted a reply that has disappeared. The most important thing was that I think this should be posted as a separate thread. A lot of people who aren't following the UK testing would be interested.
  13. bullybeef

    bullybeef Senior Member

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    North West, England, UK
    Good idea Lesley. I sort one out now.
  14. Advocate

    Advocate Senior Member

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    Gerwyn, with all of your hard work here on this forum, you so deserve this test.
  15. Knackered

    Knackered Guest

    Just to let everyone know I'll be sharing my results on this forum along with details of my condition's history and symptoms when I get the results.

    I only wish we knew more about when the testing would begin.
  16. SunnyGal

    SunnyGal Senior Member

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    I also fit the Canadian criteria but can't pinpoint the start of my illness to a single viral event. I actually rarely got colds my entire life and only had a flu once when I was about 22 (it was very bad for 4-5 days and took me about a month to feel fully recovered, but no increase in CFS symptoms after that), and then once again last year after starting on treatment. I've had mild CFS symptoms off and on since I was 9 or 10, and then at 34 with my first pregnancy I developed definite symptoms that never left.

    Sunny
  17. sproggle

    sproggle Jan

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    Email from Phlebotomy Services International INC. regarding study participation!!!!!

    Dear Janet,
    We are contacting you because you have requested to be included in a study for XMRV. Phlebotomy Services International is organizing the required specimen collections for WPI and other research organizations. We are in the process of organizing collection locations near you. We will send you a schedule of event locations and times available. You will have the opportunity to choose the location that best suites you and sign up on an interactive on-line schedule. Each of the collection events will be limited to a maximum of 20 participants, so there will be multiple days to choose from. If you are immobile or homebound and need a phlebotomist to come to you please contact me via e-mail at your convenience and we will make the appropriate arrangements.
    Sincerely,
    Ed Cutler
    President
    Phlebotomy Services International INC.

    Off to bed nowit's 1am here &at hospital tomorrow....

    Jan xx
  18. Kati

    Kati Patient in training

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    Yay Jan!!! Thank you so much for sharing! The study is under way!!!
  19. Knackered

    Knackered Guest

    I received the exact same email, great isn't it! :)
  20. sproggle

    sproggle Jan

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    Phlebotomy Services International INC.
    55 South 5th Street Central Point, OR 97502
    00 + 1 + 541-664-4382 EXT 100

    http://phlebotomyservices.com



    Wonder where my nearset Patient Services Centre will be? Doubt will be close enough to travel to, but you never know.

    Off to hosp......

    Jan xx

    @Knackered Yes it's pretty exciting stuff!! ;)








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