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Research study Questions, WPI DE MEIRLIER

Discussion in 'General ME/CFS Discussion' started by voner, Dec 19, 2012.

  1. voner

    voner Senior Member

    I am bit confused, and I'm wondering if anybody can provide any insights.

    I'm in looking into participating and an advertised WPI study That also Involves Dr. DE MEIRLIER.

    here is the recent WPI STUDY Announcement:

    New Strategies to Determine the Pathophysiology of CFS

    Conducted with sponsorship from the National Institutes of Health (NIH), the R01 research study, which seeks to identify infectious agents and their associated immune responses in ME/CFS, is underway. WPI is currently enrolling ME/CFS subjects and healthy controls. A total of 150 participants will be recruited by Dr. Kenny De Meirleir in Europe and another 150 participants will be recruited by the Center for Translational Medicine and WPI. With the help of these participants, researchers will be able to explore possible causes of ME/CFS such as immune cells, pathogens, and genetic or environmental factors.

    They cstate the name of their study is, "NEW STRATEGIES TO DECIPHER THE PATHOPHYSIOLOGY OF CHRONIC FATIGUE SYNDROME". But I checked in to this on the NIH project information website, and that appears to be the original WPI XMRV related study?? the NIH Study number is 1R01AI078234-01A2.

    My questions are .... First off, so do you think there's like money left over from the original government funding and they're using that to fund the current round of research?

    Second, They basically just want a blood sample, and they are going to do genetic , cytokine, chemokine testing, etc. etc. but They will not supply any participant whose supplies blood with their personal test results coming out of the study, And they will not even pay for the blood draw. Why would they not supply the participant with their test results?

    Lastly, it just irks me that they would not even pay for the minimal cost of a blood draw.

    I've learned to be very leery of involvement with Organizations or situations where the funding mechanisms etc. are not very transparent.

    comments? Maybe I'm just missing some information?
  2. Sushi

    Sushi Moderation Resource Albuquerque

  3. Kati

    Kati Patient in training

    It is not common practice for patients to receive personal results from participating in a scientific study. The XMRV study has been a costly mistake, in the sense that patients DEMANDED results.

    In the Vancouver study, patients will not get results unless screening tests are abnormal and necessitate intervention- say having lupus antibodies for instance.

    There needs to be, in my opinion, a line drawn in the sand. Let researchers keep a cool head and do their work.

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