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!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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. free at last

    free at last Senior Member

    Messages:
    616
    Likes:
    123
    As Far as i was aware that was not the intention. Thought i read a interim report might be released but thats it untill puplication. But if a interim report was to be released, Nothing has happened, as the first 50 has been in the WPI hands for some time now. Maybe the interim report ( if theres going to be one ) might be about the total blood draw, not the Ashford 50. But i havent a clue ? if anyone knows anything else more concrete
     
  2. pollycbr125

    pollycbr125 Senior Member

    Messages:
    353
    Likes:
    180
    yorkshire
    to be honest I hope they wait to publish the figures i wouldnt want anything to jeopordise this study . I thought the idea of the forum for us getting tested was that any info that appeared on that site stayed on that site and wasnt for release into the public domain . I know its hard waiting jees im still waiting to be tested but i think on this one we have to play by the book else we might just shoot ourselves in the foot .

    this is so important i personally hope that info isnt leaked . I wouldnt want it getting in the wrong hands and be used in the wrong way . Please be patient folks I know its hard its driving me nuts but if we arent we might just regret it .It Is so easy for someone to pass something on accidentally by being blown away by the excitment of the moment but do we really want that to happen ? I dont want anything to jeopardise this .

    sorry if that offend but thats my take on it especially with the mountain we have to climb anyway in the uk . As they said in the war
    'Loose Lips Sink Ships' .
     
  3. free at last

    free at last Senior Member

    Messages:
    616
    Likes:
    123
    i agree i whole heartedly Polly that nothing should put the science in jeopordy with you on that,Although i do fail to see that stating they have found it in large numbers in the uk could hurt in anyway. Infact i would have thought it would generate more interest in this country, and helping to nullify the negative uk studys so far.But if im wrong about this ( cant see how ) but if i am then yes we should be patient i agree.
     
  4. pollycbr125

    pollycbr125 Senior Member

    Messages:
    353
    Likes:
    180
    yorkshire
    My point was that info put on the xmrv site is not supposed to be put elsewhere in the public domain . So if anyone puts the figures on here if they are published on that site I for one will not be happy.I would rather not see the figures untill they are official .It is too tempting for them to be leaked .We need to do this properly WPI have come under so much critisism as it is they dont need more which is what would happen if some of the figures are leaked .
     
  5. free at last

    free at last Senior Member

    Messages:
    616
    Likes:
    123
    Wouldnt argue with that at all, protecting them the way they are protecting us is paramount, Yep.
    Good luck on testing soon Polly
     
  6. pollycbr125

    pollycbr125 Senior Member

    Messages:
    353
    Likes:
    180
    yorkshire
    Important anyone in the uk xmrv study check your emails asap x x
     
  7. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

    Messages:
    138
    Likes:
    49
    Matlock, Derbyshire, Uk
    Progress

    Thanks Polly. ;)

    So many goodies all in one postbag !!!

    I'm gobsmacked :eek::eek::eek:....... that's pretty amazing.

    Thanks & Regards,

    TGOP :tear::hug::tear:
     
  8. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Any hint for those who missed out on the study?
     
  9. Alexia

    Alexia Senior Member

    Messages:
    164
    Likes:
    0
    Portugal
    You made us curious now!!
     
  10. bullybeef

    bullybeef Senior Member

    Messages:
    476
    Likes:
    44
    North West, England, UK
    If anyone is down for a home draw but are willing to travel, could you please send an email to the forum:
    admin@xmrvweb.me.uk or info@xmrvweb.me.uk
    Type in the reference box: Willing to travel and give your nearest location.

    The forum organisers will email the exact venue addresses. It maybe an idea if you know of people in your area driving to a venue to politely ask for a lift too.

    Cheers,

    BB
     
  11. bananaman

    bananaman

    Messages:
    59
    Likes:
    1
    Bognor UK
    The news is just that they are cracking on with the blood draws that's all guys.
     
  12. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

    Messages:
    138
    Likes:
    49
    Matlock, Derbyshire, Uk
    Are you sure ?
     
  13. maryb

    maryb iherb code TAK122

    Messages:
    2,882
    Likes:
    2,013
    UK
    Has anyone been given details of the exact locations yet?
     
  14. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
  15. bullybeef

    bullybeef Senior Member

    Messages:
    476
    Likes:
    44
    North West, England, UK
    Hi Mary,

    PSI will email out the venue locations separately to each participant in the days leading up to the blood draw dates. I believe it is due to privacy reasons. If you need them sooner, Mary, you could ask the admin team on their forum. I hope this helps.

    BB
     
  16. maryb

    maryb iherb code TAK122

    Messages:
    2,882
    Likes:
    2,013
    UK
    BB thanks for that, it does say in the e-mail exact locations will be e-mailed later but some people know already where they are going so was wondering if I had missed something.
     
  17. Adam

    Adam *****

    Messages:
    495
    Likes:
    1
    Sheffield UK
    Sheffield

    Anyone going to Sheffield on 22nd July, beware, you will run into my ugly mug! ;)

    I'm the one with the battered old stick doing the Monty Python Ministry of Silly Walks silly walk. :tear:

    Oh, and i am bit greyer than avatar pic. :worried:

    :cool::cool::cool::cool:

    Adam
     
  18. pollycbr125

    pollycbr125 Senior Member

    Messages:
    353
    Likes:
    180
    yorkshire

    Lol couldnt get a lift else youd have run into my ugly mush too :D
     
  19. Dolphin

    Dolphin Senior Member

    Messages:
    6,816
    Likes:
    5,909
    Anyone hear anything about whether the people taking the blood are going to Dublin/Ireland or London this week?

    Two people (one from Ireland) were told two weeks ago the people taking the blood were coming to Dublin on Wednesday and as many as possible should try to be there. But then London is down on the timetable for Wednesday. So I'm curious has anyone from London heard it is going ahead on Wednesday as I doubt they will do both places on the one day. PM if you prefer. Or did anyone who was tested hear them discuss going to Dublin/Ireland or London or any plans for late Tuesday on of this week. I am on holidays and would have to leave tomorrow afternoon if testing is on Wednesday.
     
  20. Adam

    Adam *****

    Messages:
    495
    Likes:
    1
    Sheffield UK
    I think things are still fluid from what I can gather. The organisers on http://www.xmrvweb.me.uk/ are still arranging more venues. Contact them to see if they have Ireland dates sorted.
     

See more popular forum discussions.

Share This Page