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Get genetic testing and help ME/CFS research

Discussion in 'General ME/CFS News' started by Neunistiva, Dec 21, 2016.

  1. Neunistiva

    Neunistiva Senior Member

    I first found out about Dr. Klimas' ME/CFS Genes Study during the IACFS/ME pre-conference. It seems it has been going on for several months already, but I've never heard of it before, so I thought I'd share it here in case anyone else missed it.

    I loved their idea, it's a great way for ME/CFS patients to help researchers with no budget to collect a lot of genetic data. The collected data will be shared with Dr. Davis (Do I remember this correctly @Ben Howell?)

    I participated as a ME/CFS patient and my parents as healthy controls so I thought we’d share our experiences.

    The whole study is done online and it’s possible to do every step without getting out of bed.

    You can start answering surveys before you even have your genetic data, and many patients already got tested for other reasons, but I waited to get everything I needed because I can’t keep several things in my head at once. I will write bullet points in the order I finished them.

    • Go to or to order your kit and follow their instructions (we ordered our kits on 2nd of November, we mailed them together at the same time, and received our raw genetic data on different dates between 30th of November and 10th of December. Obviously all of this will vary depending on the time of the year, country you live in, type of shipping you choose etc.)

    • E-mail and state whether you have ME/CFS or you are a Healthy Control

    • They will send you a secure link in your e-mail inbox. You have several days to click it before it expires. Once you click it, you will be taken into an online NOVA mailbox. You will have one more e-mail there will clear instructions.

    • If you follow the instructions and click the next link you will be taken to a web form where you will fill out your real name, last name, choose a password and security question. (Write these down as you will probably not be able to fill out all the surveys at once and have to come back at a later time.)

    • Fill out a Pre-Screening Questionnaire consisting of 11 questions to see if you are eligible for the study (you may want to do this before ordering genetic test if this study is the only reason you want it)

    • Finally, fill out surveys and upload your raw genetic data. (You can take as much time as you need and even stop and come back whenever you want.)
    A few notes:

    I know this sounds like a lot to do and seems overwhelming, it did for me too, but I am severely ill and managed to do everything on my own, except read Informed Consent pdf file because that was several pages long. My mother read it for me and we were both satisfied that this was a professional and reliable research that will handle our genetic data carefully.

    Everything was pretty self-explanatory, but if you get confused there are simple instructions for everything with images for those who struggle reading text.

    I stretched out filling surveys over 3 days at a comfortable relaxed pace. Shortest survey had 1 question and longest one 162 (but that one didn’t take long to fill out either because it was actually 3 times less, 54 questions with additional symptom severity options). On the other hand, my parents who are healthy did it in about half an hour all in one day.

    I still had my mother monitor my answers because my brain does stupid mistakes all the time and I didn’t want to answer something wrong and influence the study.

    Those two private genetic companies, 23andMe and Ancestry offer several options when ordering your kit, but I e-mailed the researchers and they confirmed they only need raw genetic data so it doesn’t matter what you choose as long as you get raw genetic data.

    Relevant links:

    1. NOVA SOUTHEASTERN UNIVERSITY Institute for Neuro Immune Medicine ME/CFS Genes Study
    2. 23andMe
    3. Ancestry
    Last edited: Dec 22, 2016
  2. *GG*

    *GG* Moderator

    Concord, NH
    I hope to do something like this when my disability is approved, and finally have some income. Would like to get my parents data in their as well, they had good health most of their lives. Wonder why I didn't have as much success?


    PS You might want to break up the "bullet" section, to make it easier to read :)
    Last edited: Dec 21, 2016
    Comet likes this.
  3. Neunistiva

    Neunistiva Senior Member

    Ah, SHIFT + ENTER is my friend :)
  4. Neunistiva

    Neunistiva Senior Member

  5. btdt

    btdt Senior Member

    Why a lull in research?
    I have my 23 and me data and uploaded it to a site called Genetic Genie to find out how to help with methylation .. I could never think well enough long enough to sort it. Genetic Genie was easy to use as it linked to 23 and me without help from me... does this research site do the same thing.

    I attempted to download my raw data once and could not do it... not so sure my computer connections are secure either.. it is a shared internet access the virus program says it is not secure but the owner of the connection does not want to fix it as he does not believe it.

    Testing so far as been no use to me as I can't think well enough long enough to make use of it.

    I could use some help but not sure there is any fixing things on my end... so maybe nothing can be done.
    Still putting this out ...
    I certainly would join the project at least add my dna data if they can do the easy connection that genetic genie uses.

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