The Great Chronic Fatigue Syndrome (ME/CFS) Gene Project

Discussion in 'ME/CFS and FM News' started by Cort, Sep 16, 2016.

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Big data - it's all the rage. We're probably not going to get to the source of chronic fatigue syndrome (ME/CFS) without it. This disease (or diseases?) is probably too mysterious for researchers to get a handle on without them gathering massive amounts of data on our genome, epigenome, microbiome, metabolome and whatever other "omes" are out there.

    These big data are where the big surprises may lie. Take the Naviaux study. It suggested than infections, inflammation and metabolic syndrome were not problems in ME/CFS. Instead, our systems were in a kind of self-induced lock down.

    None of these analyses may provide the answer but all them working together could. A genetic predisposition to "X", an epigenetic trend towards "Y", a microbiome pushing the immune system one way and a metabolome indicating mitochondrial problems are present could end up painting a complete picture of ME/CFS.

    Big data acquisition, however, requires big ambitious projects such as the Ron Davis/Open Medicine Foundation project to scour the "omics" of severely ME/CFS patients, or the Lipkin/Hornig microbe project to analyze the microbiome of every possible site on the body

    Now comes Dr. Klimas' and her Great ME/CFS Genetics Project" (my title :)) to for genetics what Lipkin and Hornig are doing for the microbiome. The Klimas project at Nova Southeastern University aims to analyze the genetic data of 10,000 ME/CFS patients in order capture genetic issues that increase the risk for getting ME/CFS.

    Nothing like this has been attempted before and it's not an academic exercise. Identifying the genes at work in ME/CFS could lead to treatments that either block or enhance the activity of those genes, or which manipulate the biological pathways that have been disturbed.

    Dr. Klimas just needs your genetic data, and you don't need to go to your doctor to get it. 23andME and provide the genetic analyses and you provide them to Dr. Klimas's safe, encrypted database. (23andME's is more expensive and provides sex chromosome data and reports. With the exception of the sex chromosome data, provides the same data to Dr. Klimas), Not only will you contribute to helping solve this disease but you'll probably find out some interesting stuff about your genetic heritage.

    Neanderthal Man - My 23andME test indicated, for instance, that I have more gene variants left over from our Neanderthal days than 99% of the population. (Didn't see that one coming). I am a carrier for one genetic condition I could pass onto my children but not for 39 other conditions.

    My reports suggest I probably prefer salty food (if only they knew), am lactose tolerant (no but my twin is which indicates my lactose problems probably result from my ME/CFS), eating saturated fats probably won't cause me to gain weight :)), I'm probably not a big coffee drinker (yep), I'm probably not a deep sleeper and I probably move around when I sleep (yes.)

    Of course, information on MTHFR, the COMT genes and other genes that are possibly implicated in ME/CFS are there for the digging. A recent CDC study, for instance, found a bunch of genes variants they believe are associated with ME/CFS. (They need more data to be sure: something perhaps like a big data project...) If you have your genome data you should be able to determine if you have those variants or SNP's (even if there's nothing you can do about them right now.)

    Linda Tanenbaum of the Open Medicine Foundation reported that Ron Davis - who is one of the top geneticists in the world - will, in concert with the Open Medicine Foundation, help analyze the data and will collaborate (share data) with the project.

    Health Rising plans at some point to publish all the SNP's studies suggest are associated with ME/CFS). (Health Rising is also looking for someone who can walk us through an analysis of a genome (probably mine.)).

    Know that you're interested in the study? Send an email to and they'll start you on the process.
    The Klimas Gene Study Interview

    Find out more about the project in the interview below with Kelly Gaunt, the person leading the gene data collection effort.

    The Blurb For the Study
    If you are interested in participating or have any questions, send an email to
    Last edited: Sep 16, 2016
  2. Veronique

    Veronique Member

    I'm a Neanderthal in my genetic make-up too :). This is exciting research to hear about Cort - I'm in and have just emailed them. How wonderful to have something any of us can so easily participate in! Thanks!!
    Eset Isadore likes this.
  3. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Ha! A Neanderthal woman :).

    Wouldn't it be something if Neanderthal DNA started popping up in ME/CFS?
    Eset Isadore, PamJ and Lissa like this.
  4. Veronique

    Veronique Member

    Indeed! We Neanderthals may have to stick together :)
  5. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I was sure I was more modern than that. I thought I was on the upper wrung of the evolutionary ladder....Instead I'm kind of a throw back... :woot:
    Last edited: Sep 16, 2016
    Eset Isadore, Lissa and Veronique like this.
  6. HMBCheryl

    HMBCheryl Member

    Because I want to participate in every research study that I can, I sent away for the 23 and me kit when I first heard about the Klimas study. The genetic data you receive is not easy to decipher, there are a couple websites that can help like, or

    The mind blowing thing for me was this bonus. The 23&me website allows you to decide to share data with DNA relatives if you want to do so. I did, and up popped a half-sister that I never knew existed. Her post said that she had found her birth mother but was still looking for her birth father.( My parents divorced when I was 3, and she is 5 years younger that me.)

    I messaged her, and found that although we were both born in Michigan, she lives only an hour away from me in Northern California. We have connected, and I now have her wonderful family of five in my life.

    It is a gift I would have never received if I hadn't been diagnosed with CFS.
    I would encourage anyone who has the means to participate in the Klimas study. Not only is is the one way you can participate in research without leaving your home, but you may get information that might just change your life.
    Last edited by a moderator: Sep 16, 2016
  7. fdotx

    fdotx Well-Known Member

    I'm another Neanderthal - more than 97% of the population. This is great Cort, i did 23and Me but don't know how to read it - I suppose it's not likely the study could give us our individual results of what they're looking for?

    My brother was reading an article I think in Time not sure, but it had to do with the manipulation of genes in embryos that is going on now and the ethics - he read the scientists couldn't work on an embryo after so many weeks and there's a kit you can order for 150 bucks or for yourself -don't know how that works but he said it was a fascinating article - if anyone is interested I'll ask him the exact magazine and edition. His was wondering if this could lead to a cure for CFIDS in the future.
  8. fdotx

    fdotx Well-Known Member

    WOW what a neat story! So happy you found each other.
    Veronique likes this.
  9. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Ha! That's amazing. I didn't know you could do that. I'll give it a try.
    The dirty secret with my family - the "Johnson family" is that we're not Johnsons at all! My uncle found out that way back when one of my great, great (great) grandmothers had a child out of wedlock. She then married a Johnson and took that name. That child was one of my great, great grandfathers

    So we don't know what we are :rolleyes: - only our DNA does.

    Thanks for the idea.
  10. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    If someone knows how to decode a person's genetic data I'd really like to do a blog demonstrating how to do that for everyone.
    jillzrz, Karmin and PamJ like this.
  11. Katie

    Katie Active Member

    As a matter of fact I just ordered 23and Me this morning.

    A warning: I wasted my money on AncestryDNA-Canada site. They only give heritage information and not medical-I have no idea why, heard different reasons, so I'm re-doing the process with 23and Me.

    I'm actually both nervous and excited to get the results.

    The Klimas' gene study definitely still needs many more participants.
  12. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Cool... I'm starting to dig into the DNA relatives part...It's fascinating...

    Good luck!

    Katie likes this.
  13. Katie

    Katie Active Member

    My half sister and I met just a couple years ago. We are 8 years apart, born in different provinces (BC and Manitoba, I was adopted)) yet lived half an hour from each other, unbeknownst to any of us for several years!
    Our mother died from cancer (where it started is unknown) and I'm very curious to know what else lurks in my genes. :)
    Eset Isadore likes this.
  14. Katie

    Katie Active Member

    I am adopted but my cousin started finding relatives through Ancestry and it turns out my dad descended from a famous Sioux Chief! And they look alike! I was blown away. He never knew, unfortunately he has passed.
  15. Sarah R.

    Sarah R. Active Member

    Yep, I have more Neanderthal variants than 59% of 23andMe customers.... I'm going to be very interested to see if this has anything to do with having ME/CFS. I asked to be signed up for the study. We'll see if I qualify. Thanks for the heads up about this, Cort!
    Eset Isadore likes this.
  16. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

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  17. ElaineC

    ElaineC New Member

    Great potential for Dr. Klimas' study. If she can get 10,000 patients' data that could mean a big boon for 23andme. It'd be wonderful if they could be convinced somehow to offer a discount for patients that will be enrolled in the study. We have such huge out of pocket expenditures with this disease already.
    Eset Isadore and PamJ like this.
  18. Veet

    Veet Well-Known Member

    I think this is the study I tried to join, but was rejected because I don't have an official diagnosis. Is that a requirement here? thx.
  19. Lissa

    Lissa Well-Known Member

    I came up as 94%! (more Neanderthal than 94% of other 23&me Customers...)
    That's kinda crazy - I wonder if it is more than coincidence?!
    Eset Isadore likes this.
  20. keepinghopealive

    keepinghopealive Active Member

    "It suggested than infections, inflammation and metabolic syndrome were not problems in ME/CFS."

    Cort, are you quite sure about that? You know more about this stuff than I do, but isn't it eminently possible that (for example) some kind of ongoing infection, perhaps in the gut, is causing the body to stay in the Dauer state? Isn't that what Dr Lipkin is looking for?