1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Patient Experience: "What Bronllys taught me about pacing."
In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course...
Discuss the article on the Forums.

WPI UK XMRV testing/study

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

  1. JAS

    JAS

    Messages:
    70
    Likes:
    0
    UK
    I have just received the following email from Dr Judy Mikovits:-

    ****
    We are having an independent phlebotomy company draw samples in the UK in the next two weeks if you or others would like to participate send me your addresses and contact info ASAP. samples will be split and shipped half to an independent trustworthy lab and half to the WPI to determine XMRV status exactly as in the WPI Science study.
    ****

    If you would like to take part please send your contact details to:- judym@wpinstitute.org asap. With warmest regards, Julie x
  2. Jenny

    Jenny Senior Member

    Messages:
    1,224
    Likes:
    176
    London
    Wow!

    I wonder if they'll come to your home to get the blood? I'm in if they do.

    But I guess we won't get the results if it's for research.

    Jenny
  3. Tom

    Tom windows exterminator

    Messages:
    94
    Likes:
    0
    cost ???

    Tight Scot
  4. valia

    valia Senior Member

    Messages:
    207
    Likes:
    1
    UK

    Hi JAS,

    Sorry, I didn't quite get this, is Dr Mikovits inviting you specifically and perhaps a few others or are you putting this here so that any of us might contact her if we wish to participate?
  5. coxy

    coxy Senior Member

    Messages:
    174
    Likes:
    1
    i have just emailed her to say i would like to take part. i have asked if i will get to know the results & how long it will take. i didn't even think of the cost actually or where it will be done! If i hear back i will let you all know.
  6. Knackered

    Knackered Guest

    I've emailed her too, she said I'd recieve information within the next two weeks. I never thought to ask whether I'd receive the results. I don't suppose it matters though, so long as it helps, I don't mind.
  7. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    I have no new information, but would think that the results would be made available. The people in the original Science study were able to get their results as soon as the samples became unblinded (is that the right word?). In my study with the WPI, they are also giving patients their test results. This sounds really hopeful.
  8. JAS

    JAS

    Messages:
    70
    Likes:
    0
    UK
    Hi Vaila, she is inviting anyone, not just me..there are only a set number of places and I think they are nearly full. This thread will be obselete from tomorrow as far as testing is concerned. jx
  9. Wheeee! How exciting...
    I propose that this thread be renamed 'Free XMRV testing in the UK'; is that ok with you JAS?

    Rachel xx
  10. valia

    valia Senior Member

    Messages:
    207
    Likes:
    1
    UK
    Thank you JAS, Doh! the penny did drop eventually, when I realised I had completely ignored the title of the thread "ALL IN THE UK"

    I have sent an email.
  11. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    4
    How exciting! Wonder who the 'independent trustworthy lab" is....?
  12. coxy

    coxy Senior Member

    Messages:
    174
    Likes:
    1
    judy replied practically straight away & said she'd be contacting me within the next few weeks, i think it may of been an automated reply though.
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,168
    NYC (& RI)
    It is so great to see WPI responding adroitly to the UK studies! Thanks to WPI and all the other organizations and people fighting to get to the truth and get meaningful help for ME/CFIDS patients!
  14. maryb

    maryb iherb code TAK122

    Messages:
    2,738
    Likes:
    1,758
    UK
    I don't think it was an automated reply she used my first name.
  15. coxy

    coxy Senior Member

    Messages:
    174
    Likes:
    1
    she answered Great got it! thanks..... will be contacting you in the next few weeks
  16. JAS

    JAS

    Messages:
    70
    Likes:
    0
    UK
    Hi Rachel, would just be worried that it would imply this is an ongoing thing, it is a study too and I think that the set number of places have possibly already been filled, if not will be by tomorrow. I am just so pleased and grateful that the WPI are doing this in the UK for us and I wish all the luck to everyone who has managed to get on and is taking part. I have had my result, I am XMRV +ve through VIP Dx, I am sure you will agree we do not need 'views' here in the UK any longer, we do not need 'beliefs'...but we do need science as that is the only way anything is going to get changed with this, then finally if XMRV is established as a link sufferers can get the respect they deserve and the knowledge that is required to produce appropriate medication for this serious and disabling illness. But good science takes time and we do need to give them that time, I support the WPI 100% and thank them so much for supporting us here. Sorry to get so 'heavy', I have crashed with the news and quite tired at the minute...just had a bit of wobble today too about what it all really means....early night beckons! jx
  17. fingers

    fingers Senior Member

    Messages:
    210
    Likes:
    7
    SW Endland
    What the results might tell us

    It wil be interesting to see the results of this study.

    The selection criteria seem to be:

    UK residence
    Phoenix Rising membership
    Phoenix rising forum frequent visitor
    Fast e-mail responder

    Am I missing anything?

    The analysis could get complicated.
  18. Knackered

    Knackered Guest

    I'm really quite excited about this, Judy emailed me to say PSI would be in contact with me within 2 weeks, I hope nothing goes wrong.

    I really want to get tested, if XMRV is the cause of our illness I'm pretty much 99% sure I'll test positive. But, what to do when/if we are? Sit and wait until science finds a way to kick the virus' ass I guess.

    Judy's really great, I hope she makes a name for herself once everything's over and she finally finds out what the cause is. EXCITING!
  19. Countrygirl

    Countrygirl Senior Member

    Messages:
    773
    Likes:
    433
    UK
    Hello Coxy and Knackered,

    I'm delighted to hear that you have heard from Dr Judy and that you will be tested. :Retro smile: I sent an e-mail three hours ago, but have heard nothing. May I ask when you contacted WPI? I expect I sent mine in too late. Another time perhaps. :tear:
  20. bullybeef

    bullybeef Senior Member

    Messages:
    476
    Likes:
    44
    North West, England, UK
    I am ecstatic to say I have been selected too.

    But Judy says they can test my wife!!! She doesn’t have ME as far as we know. I mentioned my children, and Judy suggested testing me and my wife so if we are both carriers, than if would be certain that our children are. Like many, I am worried for my children, but they will be too young to be tested based on research restrictions.

    So does anyone believe this is a follow up study to prove prevalence in Europe and the UK? It seems a huge coincidence that on the day the UK ME charity, Invest In ME chose to fund the WPI, and then they ask for test subjects from the UK.

See more popular forum discussions.

Share This Page