August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
Discuss the article on the Forums.

I got word from WPI of being in a new study

Discussion in 'XMRV Research and Replication Studies' started by dmarie4301, Mar 29, 2010.

  1. dmarie4301

    dmarie4301 Guest

    I received it yesterday morning, March 28, 2010

    Here's the letter:

    Ms. xxxxx,
    We have you on our Research Study, and we have not forgotten you. We appreciate your patience and continued support in the W.P.I. We will be contacting you within the next three months if not sooner.

    Sincerely,

    Debbie Taylor-Cramer
    Whittemore Peterson Institute
    Applied Research Facility Rm 401/MS199
    1664 North Virginia St
    University of Nevada, Reno
    Reno NV 89557


    Dr. Judy said they'd be calling us who filled out the WPI online questionaire in March, this month, but looks like it will take longer. But I was glad to finally get notification. I think that being ON a study means I will be IN the study?

    Anyway, good to know they will be contacting me....!
     
  2. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    8
    Bay Area, California
    That's exciting dmarie. I hope you are in the study!
     
  3. Min

    Min Guest

    Messages:
    1,386
    Likes:
    1,927
    UK
    What exciting news for you!!! hope you hear back soon!

    (what country are you in please?)
     
  4. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,328
    Likes:
    4,047
    N. California
    Good for you. Please keep us posted!
     
  5. dmarie4301

    dmarie4301 Guest

    I am in Portland, Oregon, USA. This shows to me that they are still on their game. With no further talks from Mikovits, I was wondering what was up. I DO hope this XMRV turns out to be the culprit for us. 20 years is a long time to be sick.
     
  6. camas

    camas Senior Member

    Messages:
    697
    Likes:
    227
    Oregon
    That's great news, dmarie! They must have been overwhelmed by questionnaires if it's taking three months to get back to everyone.
     
  7. Hope123

    Hope123 Senior Member

    Messages:
    1,239
    Likes:
    1,025
    That research questionairre has been up for a long-time and I signed up for it the first week it was posted yet have not heard anything from them. I know they received it because I got a letter from WPI not long after asking for a donation and I sent them a check. I wonder if they're picking particular people based on specific. Good to hear they're starting.
     
  8. aiden424

    aiden424

    Messages:
    68
    Likes:
    4
    Did you already have a positive XMRV test?
     
  9. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    8
    Bay Area, California
    It would be really cool if they set us up in groups geographically so they could hit all the PWC in Oregon at once and the Bay Area at once etc...

    I would be so happy if they came to take my blood!
     
  10. Cort

    Cort Phoenix Rising Founder

    What I like is the fact they're doing all these studies - they still have money and are moving forward.....
     
  11. dmarie4301

    dmarie4301 Guest

    I tried the dumb Coop PCR test and was negative. I was going to wait for the WPI's antibody test, but now since they are moving forward with studies, I'll give my blood for free :)

    I was getting worried cuz I filled out that questionaire, then filled it out again, emailed Dr. Judy, (no response), called the office a couple times. This time the lady said for sure they'd get back to me.

    I am also wondering when they will do the transfusion study, cuz WPI was asking for people with CFIDS who had gotten a transfusion and got sick afterwards within the past 7 years, to contact them. I dont fit in that category, but that makes it sound like two new studies will be upcoming.

    So, on we go....what else can we do. I sure am tired of being sick. Isnt it just the pits?
     
  12. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    8
    Bay Area, California
    This illness is pure Hell in it's severe forms!
     
  13. creekfeet

    creekfeet Sockfeet

    Messages:
    553
    Likes:
    5
    Eastern High Sierra
    Maybe the transfusion people will be one segment of the larger study: a study within a study?
     
  14. dmarie4301

    dmarie4301 Guest

    Dont know. Im just happy to give away my blood. See what they can find and if it can help in understanding this life sucking illness.
     
  15. Adam

    Adam

    Messages:
    495
    Likes:
    2
    Sheffield UK
    Hi Dmarie

    So glad to hear your news. We are both in studies now. Here's to more good news!

    all the best

    Adam
     
  16. dmarie4301

    dmarie4301 Guest

    What study are you in Adam, if I may ask..
     
  17. Adam

    Adam

    Messages:
    495
    Likes:
    2
    Sheffield UK
    Hi Dmarie

    It is the UK study the WPI are doing with the charity money from Invest in ME. 225 are in the study. They are starting very soon collecting the blood, shipping back to your side of the pond. We should get results about 3 weeks after that.
     

See more popular forum discussions.

Share This Page