Tuesday, August 04, 2009

CFS Genetic Study

My older son, Jamie, and I are participating in a new research study that aims to identify some of the genetic markers associated with CFS. This is exciting stuff! It's a large-scale study through University of Illinois at Chicago that will look at genetic markers in people with CFS related to EBV and HHV-6 infections. Best of all, anyone over the age of 13 can participate from anywhere in the U.S.

All that's required is filling out some forms, taking part in a short phone interview, and submitting blood for analysis. You don't even need to leave your house - they'll send a visiting nurse to take the blood sample. And you'll be paid a small stipend for your participation.

It's a great opportunity to help move CFS research along - real, solid research based in hard science that could help lead to tests or treatments. I like to participate in studies whenever I can. It helps to remove that helpless feeling and makes me feel like I can make a difference.

If you're interested in joining Jamie and I in this study, contact Dr. Taylor at UIC at mono@uic.edu or call the research assistant at 312-339-5257.

P.S. In contrast, another totally useless CFS study was published recently. The result? Supposedly, kids with CFS have parents who have higher academic expectations than other kids; therefore, high parental expectations put a child at greater risk for CFS. HUH?? There were only about a dozen kids in the study. My husband was ticked off when he heard about this one. He said, "What kind of scientist doesn't understand that finding a correlation between two things doesn't necessarily indicate a cause and effect?" What a waste of our limited CFS research money.

12 comments:

  1. Sue, this is wonderful! May I post this information on my blog? Also, does Dr. Taylor need healthy volunteers, too?

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  2. This is great, Sue. We'll sign up. (Oh, and lower our academic expectations for Dash, of course.)

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  3. Wow, thanks Sue!

    I wouldn't mind taking part in that study myself!
    Do they test other family members (mother, father, siblings?) Anyway, hope you're hanging in there.
    I'm really liking Dr Levine a lot! Thank goodness I finally found her, and she's so close!

    Best, Martine

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  4. Maybe it was motivated parents that got their kids into the study. Such a small sample too.

    Grrrr. I agree. There's a lot of tosh around about CFS. I read everything with a large dose of cynicism.

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  5. Glad to see such an enthusiastic response!

    Yes, Alyson, it's fine to post it on your blog.

    I believe the study is only for CFS patients who meet certain criteria (that's what the initial phone interview is for) - I don't think it includes any healthy controls or family members without CFS.

    Anne - yes, certainly lower your expectations for your son!

    Martine- So glad to hear you're happy with Dr. Levine!

    Sue

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  6. Jo -

    I had similar thoughts about that ridiculous study. Even more basic...if estimates are correct that 75-80% of those with CFS are undiagnosed or misdiagnosed, then which children and teens are likely to be correctly diagnosed? Those with well-educated, informed parents who are likely to have high academic expectations for the kids.

    But then, it makes me angry that I'm even wasting time thinking about this silly study!

    Sue

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  7. I am participating in this study as well. :)

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  8. Fully agree with your comments about cause and effect!

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  9. Thanks for informing us about the studies being done. So glad you and your son are able to be a part of this research study.

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  10. Anonymous12:34 PM

    Im dialing practically as you speak. Im crashed because I forgot to put the LDN into my pill pack this week. How can it be a placebo if I don't realize Im not taking it and I predictably get sick? Personally I thought the LDN was Hoooey. Now I agree it is the real deal, perhaps only for some people. I've been very lucky. The Valcyte worked for me and the LDN is helping me maintain. I cannot tell you how grateful I am for your blog or I would have never heard a thing about the LDN. My scientist husband found the Valcyte which led to your blog.

    The leads to my critique of MD's as scientist. First, all scientist are biased but are usually trained to work toward objectivity. MD's are taught that they know everything and often view trials and studies merely as a way to verify or justify certain practices. I know- I worked in Cancer research and my husband has worked extensively with MD's. He says that many MD's barely understand the Chemistry behind what they are doing, so they are easy prey to any drug rep out there. They also do not have good education on what makes good science so they are more likely to use a correlation without a proof follow- up and present it as a legit study. They also put more stock into small sample size because medical studies often do not have a lot of participants. (nuts) And they just don't have (Or don't care to spend the time) to conduct a larger study.

    If I felt better I'd go kick some az. Sheesh!

    S

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  11. UPDATE:

    One of my blog readers just informed me that when she called to sign up, she was told the study couldn't accept any more patients until they got more funding. This is news to me since two days ago, they told me they still needed people and it was OK to post it in my blog! I'm checking into it and will let you know as soon as I hear more.

    Sue

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  12. Anonymous -

    So glad to hear antivirals and LDN have worked for you! Yes, LDN has been amazing for me, too.

    And I think you're right about many medical studies. There are certainly some researchers doing great, necessary work, too, but it gets frustrating to keep reading studies that have little to do with science or helping to find effective treatments.

    Thanks for your comments.

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