1. Patients launch a $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!
Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
Discuss the article on the Forums.

WPI USA XMRV testing/study--IT HAS STARTED

Discussion in 'XMRV Research and Replication Studies' started by Rrrr, Apr 20, 2010.

  1. Rrrr

    Rrrr Senior Member

    Messages:
    1,393
    Likes:
    253
    My apologies if this is already a thread elsewhere on this site...

    I got the call today!!! WPI has hired a Phlebotomy/blood drawing company to collect my blood and that of many of my cfs friends in MA. the company called me today: we all got the call today!! (3 of my CFS friends.) the blood drawing company is sending us all kits that are due to arrive at our doors on thursday. then i have to go get it drawn at some designated lab sites (don't know which yet), then fedex picks it up and overnights it to WPI. one friend is bedridden and they said a visiting nurse or Phlebotomist can draw the blood.

    Tammy, who is making the calls for the Phlebotomy company did not know about CFS/XMRV. I told her all about it. She was amazed. She also said that the WPI is giving her new names to call each day. She guesses there are 300 from across the USA.

    has anyone else gotten the call today?
  2. fred

    fred The game is afoot

    Messages:
    400
    Likes:
    1
  3. Rrrr

    Rrrr Senior Member

    Messages:
    1,393
    Likes:
    253
    I just was on the WPI UK testing/study thread and at first read on post #62 and #63 that they (in the UK) will get their individual test results. But then read (thanks to fred's post) that, no, they won't get their individual test results until judy mikovits gets the results published in a journal. this is what fred's post said:

    See post #384 from jace:
    "The results will not go to patients until her paper has been accepted in a medical journal. She will however, release some figures (i.e. %) from the Ashford draws when the bloods have been analysed."

    hmmmmmm. i wonder if the same is true for the US. i guess i have to just email judy. i hate to bother her... but i really want to know if i'll know my test results.

    rrrr
  4. Adam

    Adam *****

    Messages:
    495
    Likes:
    1
    Sheffield UK
    Rrrr. You can't apologise for posting good news!

    I'm so glad another study is under way. Glad for all my PR friends who are in it. We got a little problem with a volcano right now. Actually I think the volcano is a metaphor. Or it should be a mountain? Anyway, the WPI, what was it some called them sneeringly recently, a little lab in Reno or something, are moving mountains right now whilst others fiddle.

    Best of luck to all concerned.
  5. fred

    fred The game is afoot

    Messages:
    400
    Likes:
    1
    UK people will receive their results after a paper of the study has been published. The results will go direct to patients and not to GPs. I also wonder if this will be the same in the US and if there are any research ethics rules that might mean studies have to be handled differently to the UK.
  6. Rrrr

    Rrrr Senior Member

    Messages:
    1,393
    Likes:
    253
    well, i just emailed judy m to ask. let's see if she replies...
  7. sproggle

    sproggle Jan

    Messages:
    231
    Likes:
    22
    Teesside, England UK
    First I've heard of this study, definitely good news :victory:

    Especially if Iceland &it's silly volcanoe continues to prevent UK blood draws.. :Retro mad:
    Been busy with campaign stuff so might just be out the loop, do we know anything about this study?

    Jan x
  8. Rrrr

    Rrrr Senior Member

    Messages:
    1,393
    Likes:
    253
    judy emailed back right away after i thanked her and asked if we'd hear about our results.

    "Yes . We will tell you if there is evidence of XMRV infection!
    Thanks not to me but to Katy and Debbie who make it all happen!"

    YAAAAAAAAAAY!!!!!!!!!!!!!!!
  9. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,268
    Likes:
    1,637
    London
    Rrrr,

    Did you check to see who the results will go back to first? Will they go through your doctor first and then to you or straight to you? Did they ask for your doctors details.

    The only reason I am mentioning this is that I participated in a USA study a while back. They told me that although I would get the results they had to go through my doctor first. They were amazed when they looked at the UK legal side and saw that they didn't have to do that for patients here.

    Just an idea as that requirement may have changed over time in the USA.

    So glad to hear that your USA study has started as well. You can keep the UK group company!
  10. garcia

    garcia Aristocrat Extraordinaire

    Messages:
    933
    Likes:
    101
    London, UK
    Does anyone know what the US study is testing for? Apologies if its already been posted, but I can't remember.
  11. Rrrr

    Rrrr Senior Member

    Messages:
    1,393
    Likes:
    253
    i emailed judy again, asking what test will be done. she wrote this:

    "all 4! You get the cadillac version!"

    god, i love her!

    i did not ask who the test results go to. i did not give her or the phlebotomy company my doctor's info, so i assume it goes to us, the study participants. that is what Cooperative Diagnostics did with me when I did their XMRV test a few months ago (my test results were negative, like everyone else, i think..?)

    i'm sitting here crying. my life is so so hard right now, just about hell, actually. and has been for 20 long years. and this is the first time i feel like someone in the medical community is throwing me a life line. i sure hope i'm xmrv positive.

    did anyone else get a call today besides me and my 2 other cfs friends?

    Rrrr
  12. creekfeet

    creekfeet Sockfeet

    Messages:
    553
    Likes:
    2
    Eastern High Sierra
    Waiting for the call... if they're starting in MA, does that mean CA will be last? D:
  13. Otis

    Otis SeƱor Mumbler

    Messages:
    1,116
    Likes:
    115
    USA
    Rrrr,

    CONGRATS!!

    Did you fill out the questionnaire a long time ago? I'm just wondering if they're working their way through the list in order of receipt.

    Does anyone have any insight if people will be contacted to let them know they won't be part of the study for any reason.

    Thanks,
    Otis
  14. Rrrr

    Rrrr Senior Member

    Messages:
    1,393
    Likes:
    253
    otis,

    i did fill out the questionnaire on the WPI website -- twice. once a long time ago and once last week. AND i send my name, address and phone number directly to judy, as she requested it if I wanted to be part of their study (her request came when i was emailing her about something else).

    Rrrr
  15. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,268
    Likes:
    1,637
    London
    Great news Rrrr, the Cadillac version! Just what you deserve.
  16. Rrrr

    Rrrr Senior Member

    Messages:
    1,393
    Likes:
    253
    thanks, ukxmrv! and just to be clear, judy mikovits is saying that ALL study participants in the USA will get all 4 tests done (not just me, of course).

    i think if anyone wants to be in this study, the best route to go is to sign up at the WPI website (fill out their form).
    http://www.wpinstitute.org/xmrv/xmrv_trials.html

    and/or you can send your name, address and phone either directly to judy mikovits (judym@wpinstitute.org) or the research team at WPI (contact info below). i think judy just forwards the names she gets in her email inbox to the WPI research team (again, contact info below).

    Research Program Coordinator
    Whittemore Peterson Institute
    6600 N. Wingfield Parkway
    Sparks, NV 89436
    patientinfo@wpinstitute.org
  17. sproggle

    sproggle Jan

    Messages:
    231
    Likes:
    22
    Teesside, England UK
    So pleased for you all!

    :victory: Congratulations to everyone in the US study, I'm to be tested in the current UK study but god knows when that will happen now with Iceland etc.. really pleased more sufferers are getting tested over the pond, it's great news for us all! :thumbsup:

    Pleased you will be finding out your status Rrrr, although it's nerve racking isn't it? :confused:

    So I'm now wondering if the study is still open for people to join? &how many people will get tested?? Nosey I know, but need more info lol!

    :hug:
    Jan xx

    P.S. Hopefully no 'acts of god' will get in the way of blood draws!!
  18. dsdmom

    dsdmom Senior Member

    Messages:
    390
    Likes:
    45
    I'm in MA - no call for me :(
    But, that is so wonderful about your call!!! Let us know how it goes.
  19. Rrrr

    Rrrr Senior Member

    Messages:
    1,393
    Likes:
    253
    Jan: the phlebotomy company representative, Tammy, who called today said she is getting about 50 new participant names a day from judy/WPI, and that she (Tammy) currently had about 300 names to call from all around the country, as of today. i have no idea what their cut off (limit) is.

    UK folks: in the UK study, what tests are included? all 4, like the USA test? and in the UK study, how many folks are they testing?

    Coincidently, or not so coincdently, i sent up an appt with an infectious disease doctor this week. she has been studying CFS in boston for a decade, but i had never even heard of her! she is at Mass General Hospital, a very respected hospital, and.. guess what? she is currently doing an XMRV study!! but i am too late, so i don't get to get into the study, unfortunately, because i just became a patient of hers this week (and my first appt is in JULY!). (by the way, it was not easy to become her patient. my primary care doctor had to call her office and petition for me to be her patient. and then we had to send her my EBV, CMV and mycoplasma results from 20 years ago. i now understand that she would have also accepted my more recent lyme test results, but i had not known that at the time. in short, she needs proof that you have an infectious disease before she will agree to see you. we are discussing this doctor, dr donna felsenstein, on the phoenix rising thread called: "XMRV study at Mass General Hospital in Boston" -- the link is here: http://www.forums.aboutmecfs.org/sh...eral-Hospital-in-Boston&highlight=felsenstein

    anyway, i bring this up because i think a lot of us who will be tested for xmrv thru this WPI study may want to find infectious disease doctors NOW, so we will be ready to go to them with our (hopefully positive) xmrv test results.

    rrrr
  20. leaves

    leaves Senior Member

    Messages:
    1,193
    Likes:
    14
    Hmm unfortunately at this point drs can't really do anything with your xmrv positiveness...

See more popular forum discussions.

Share This Page