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!
Science to Patients: Talking ME, Exercise and the Mitochondria - with Dr Charles Shepherd
The latest video release from the Dutch group ME/cvs Vereniging, with Dr Charles Shepherd from the UK ME Association, and announcing a live chat session to be held Thursday, April 10, 2014...
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. JillBohr

    JillBohr Senior Member

    Messages:
    247
    Likes:
    0
    Columbus, OH
    Is there anybody here that has some weight (influence) that can get Frickly in? She is definitely a prime candidate for this study. Please. I want more ME/CFS mothers in this that have children with autism.
  2. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    34
    Texas
    Already heard back from Judy M!

    She said the study has begun and they are pulling together the list now and then need to get approval to proceed. She said she did want to study me as they are putting families with overlapping disease symptoms at the top of the list. They are trying support their hypothisis that XMRV creates an underlying immune deficiency. She says they have over 4000 forms and she has copied my email over to the patient coordinator. :victory::victory::D
  3. Rrrr

    Rrrr Senior Member

    Messages:
    1,393
    Likes:
    251
    NO, i never got confirmation from the questionarre either!!! i suggset you call or email WPI to ask. why not?
  4. Rrrr

    Rrrr Senior Member

    Messages:
    1,393
    Likes:
    251
    i agree with yr last question!!!!!! -- rrrr
  5. Rrrr

    Rrrr Senior Member

    Messages:
    1,393
    Likes:
    251
    i have emailed with judy, like so many of us have, but i don't have any more weight than anyone else. i think she is in spain for the next week, so will have limited access to email. but she seems to respond to just about ALL emails all of us send her, right? again, i'm not special. she replies to all emails from all of us.
  6. Rrrr

    Rrrr Senior Member

    Messages:
    1,393
    Likes:
    251
    YAAAAY!!!!!

    and 4000, wow!
  7. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

    Messages:
    115
    Likes:
    0
    Automated responses from wpi may have gone into some folks spam box. I wonder if a persons doctor matters. The first study used patients of well known docs.
  8. JillBohr

    JillBohr Senior Member

    Messages:
    247
    Likes:
    0
    Columbus, OH
    Oh Rrrr, of course your special. As you can see, Frickly did get her answer. I do wish we could have Judy cloned. sigh.
  9. Rrrr

    Rrrr Senior Member

    Messages:
    1,393
    Likes:
    251
    jill: thanks! i needed that today. anyway, judy's optimism is sooooo infectious, isn't it?

    my friend in boston got her xmrv test kit today from WPI re the study!!!!! i did not get mine yet. fed ex is delivering them.
  10. Rrrr

    Rrrr Senior Member

    Messages:
    1,393
    Likes:
    251
    my xmrv test kit for the WPI xmrv study came today via fedex! it includes 4 test tubes (lavender tops), instructions, patient consent form, return mailing stuff.

    i will type up the patient consent form that came with the test and post it here in the next day or two, but i'm too tired to do it now. but i thought i'd at least send you the official study name:

    "New Strategies to Decipher the Pathophysiology of CFS"
    Protocol # B09/10-019
    Sponsor: NIH-NIAID #R01AI078234

    I love the name of this study, and it is great to see that the NIH is a sponsor!!!!!! does that mean this is part of the really large federal study????

    They say in the patient consent form that there will be 400 participants. And when I talked to the phlebotomy company rep today, she said she had 80 names now, and will get 200 more shortly. So that means that there are about 120 slots left (unless they have filled them all already?).

    Rrrr
  11. willow

    willow Senior Member

    Messages:
    219
    Likes:
    6
    East Midlands
    Really! That would be great Rrrr. Thx so much

    And Good Luck with the test!

    An exciting time for PWME. Federal studies, big pharma involvement. It's almost like a real disease!!!
  12. Rrrr

    Rrrr Senior Member

    Messages:
    1,393
    Likes:
    251
    i hope to type up (and post here) the letter that came with the kit soon, but i'm super sick.

    meanwhile, i just got off the phone with tammy, the phlebotomy services rep. she says there is no traveling phlebotomist in the boston area right now (i think she just suddenly quit?) and it will take them a week at least to find one. so i have to drive 30 min to get the test done at a pre-designed lab (can't go to any old lab for some reason). i will try to go tomorrow. with another cfs-er (showercap lady, for those who know her).

    tammy said that if i go tomorrow, i am the 5th person in the country to get the study test done. and that WPI can only handle 20 test kits being sent to them each week. and, as you may recall, the letter i got stated that there will be about 400 participants in the study total. if they can only do 20 per week, that means the study will be going on for many many weeks.

    rrrr
  13. InvertedTree

    InvertedTree Senior Member

    Messages:
    157
    Likes:
    5
    The WPI is way behind. I was tested along with over 150 other patients as part of a study back in September/October. I and others are still waiting for our XMRV results. We've tried sending emails etc.... but have received no response. So far only a few results have trickled in.

    I'm just saying not to expect results anytime soon. It has been over 6 months for me and still no end in sight with getting my results.
  14. madmax

    madmax

    Messages:
    4
    Likes:
    0
    Reno, NV
    Western blots to look for viral proteins
  15. rebecca1995

    rebecca1995 Apple, anyone?

    Messages:
    359
    Likes:
    20
    Northeastern US
    Rrrr...I know exactly what you mean. I've appreciated how the WPI has stepped up and moved aggressively on our behalf. Like, I loved it when Annette Whittemore said flatly at CFSAC, "CFS is not a psychiatric illness and never has been. " (Or something like that.) No qualifications or equivocations, you know?

    I hope you're positive too, since you do...:Retro smile: Good luck with the blood draw and everything!
  16. Andrew

    Andrew Senior Member

    Messages:
    1,943
    Likes:
    1,189
    Los Angeles, USA
    I signed up at the WPI web site a long time ago. I have not been notified about this test. Should I be worried?
  17. ahimsa

    ahimsa Senior Member

    Messages:
    1,004
    Likes:
    809
    Oregon, USA
    Thank you for keeping us updated on this study

    Thanks to Rrrr (hope that's spelled right - LOL!) and others for keeping us updated about this study. I'm so happy to read these updates and find out what's happening.

    I also filled out a WPI patient questionnaire a long time ago. I did not get any reply, automated or otherwise. I actually did not expect a reply or confirmation (I figured they would get too many inputs to do it manually and probably had not set up something automated) so I didn't think anything about not getting a reply until now. I simply assumed that I'd only be contacted if they wanted to include me in a research study.

    So, did some people got a confirmation email? I've only seen people saying that they did NOT get an email reply of any kind but have not seen that anyone did get a confirmation email (unless I've misread or misunderstood something here - very easy for me to do).

    Marjorie
  18. dmarie4301

    dmarie4301 Guest

    Hi Marjorie!!! Fancy meeting you here!!! I called and was told I would be contacted. Then I got an email saying I was on a study, (Im still wondering if that means IN a study)....anyway, sounds like they are backlogged. They need to hire more lab workers. Hmmm, maybe I wil become a member here soon.

    Donna
  19. Dr. Yes

    Dr. Yes Shame on You

    Messages:
    867
    Likes:
    22
    I signed up in February and got the following email notification soon afterwards:

    I'm going to take a complete guess and say that maybe they did not start sending out email notifications until somewhat later in the process.
  20. ahimsa

    ahimsa Senior Member

    Messages:
    1,004
    Likes:
    809
    Oregon, USA
    Wow, two quick replies - thanks!

    Thanks to both Donna (hi!) and Dr Yes for the very quick replies.

    Dr. Yes, your hypothesis sounds about right to me. I think I signed up within a couple of days of when WPI first posted the questionnaire on their web site. It was earlier than Feb. but I don't remember when it was.

    Marjorie

See more popular forum discussions.

Share This Page