CFS: National U.S. research study recruiting

Discussion in 'Fibromyalgia Main Forum' started by Lichu3, Jul 12, 2008.

  1. Lichu3

    Lichu3 New Member

    This was on the PH homepage.

    This is another groups of legitimate researchers who are looking at ME/CFS from a different angle - perhaps another subset?

    Dr. Huber's work looks at viruses, particularly EBV, triggering endogenous (meaning these are part of our genome when we are born, not like HIV) retroviruses
    that set off the immune system and lead to CFS.

    Note that the study is NATIONAL (sounds like you can be anywhere in the U.S.) and takes into account the fact that CFS patients may be homebound (telephone interviews and blood draws done at your house).

    Let's try to help this study get filled fast so we can get some results. Spread the word.


    National ME/CFS Genetic Risk Factor Study Needs 400 Participants


    Researchers at Tufts University, Boston, and the University of Illinois at Chicago are issuing a national call for ME/CFS (chronic fatigue syndrome) patients in the U.S. to participate at no cost to them in a study to identify genetic risk factors that may be associated with the illness.

    The study is designed to allow remote, home-based patient participation, allowing the broadest sample possible – with a target of 400 individuals, ages 13 to 64, with a documented physician’s diagnosis of either ME/CFS (‘chronic fatigue syndrome’) or mononucleosis.

    The first portion of the study includes a phone interview and home-based blood draw – target participation 400 patients.

    The second part of the study will follow 40 selected ME/CFS patients and 40 healthy control subject over a two-year time period. These subjects will be interviewed by phone and submit home-based blood draws on three occasions during that period.

    Throughout, participants will be able to continue their current routines and therapies.
    The study’s principal investigators are:

    Dr. Brigitte Huber of Tufts University and

    Dr. Renee Taylor of the University of Illinois at Chicago.
    Both specialize in ME/CFS research and have been involved, for example, in studying the possibility that those who develop ME/CFS may be susceptible to activation of an ancient retrovirus in the human genome.

    Contact Information
    To learn more, contact Dr. Renee Taylor
    Phone 847-207-7944 (office)

  2. Lichu3

    Lichu3 New Member

  3. jasminetee

    jasminetee Member

    That's excellent! I'm going to try to participate.
  4. Forebearance

    Forebearance Member

    An ancient retrovirus? That's a new one to me!

    It sounds interesting.

  5. redhummingbird

    redhummingbird New Member

    I'm interested in participating and left messages, emails but have yet to receive anything back.

    Has anyone heard back from them?

    LISALOO New Member

    I e-mailed the person at UIC, and filled out the innitial paperwork. She's looking into the genetics. Will they show that you may have CFS after mono or HHV6 due to genes.
  7. Lichu3

    Lichu3 New Member

    but suspect they might be getting a bunch of phone calls/ e-mail since this just came up recently so I'm waiting patiently.

  8. redhummingbird

    redhummingbird New Member

    I heard from the assistant to the researcher. She asked for my mailing address to send information.

    It took a few days. Someone posted earlier that they might be bombarded with emails, calls, etc...

  9. marti_zavala

    marti_zavala Member

    somehow, I missed this post.


    P.S., I would be very interested to know if they are going to give the results to participants.

    [This Message was Edited on 07/17/2008]
  10. tangie

    tangie New Member

    I would looovvveeee to participate in this study and Im going to attempt to get in touch with them since I live in Chicago and since a study was how I got my diagnosis in the first place. The UIC was a school that I was attempting to attend for my BA for law school b4 i got sick. Very good university. Will send an email as soon as possible.
  11. gapsych

    gapsych New Member

    To the UI. A great school and my alma mater for my undergraduate and graduate work!!

    That was decades ago, but I will not tell you how many. If I had this DD then, I would have never made it.

    What was the study you participated in.

    Take care,

    [This Message was Edited on 07/20/2008]
  12. labrat

    labrat New Member

  13. jasminetee

    jasminetee Member

    They haven't gotten back to me yet. I e-mailed them on 7-15.

  14. Lichu3

    Lichu3 New Member

    I haven't gotten anything back yet but if you call the number listed, the researcher has a message directing you to their office now. She also mentions that they have been "inundated" with responses and are slowly working their way through.
  15. jasminetee

    jasminetee Member

    I'll have to check my e-mail when I'm up to it. It's wonderful that they're getting so many responses.

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