Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Thursday, February 14, 2013

Got my 23andMe results

I received my 23andMe results yesterday.  For those that don't know, there is a company in Mountain View, California, called 23andMe, that has widely commercialized genetic testing.  For $99 they will send you an empty vial by mail.  You spit into the vial and mail it back.  Within about 30 days, they provide a detailed breakdown of your genetic composition.  You can use a secure online account on the 23andMe website to interpret the information and receive a personalized breakdown of various aspects of your genes.

23andMe is being used increasingly by PWMEs to guide their treatment.  But before we get into that, let's discuss a few other interested features of the service:

General Interest...stuff

There are many different reasons people use 23andMe.  Some are interested in their ethnic background.  One can, for instance, determine if her family's claimed ethnic background is accurate.  This topic happens to be a source of debate on one side of my family, so it will be interesting to delve into the details and settle the dispute once and for all.

If distant (perhaps, unknown) relatives have used 23andMe, the service will connect you with them, as long as you and the relative have both enabled that option.  

Another feature is that clients can learn what percentage of their DNA is Neanderthal.  About 30,000 to 50,000 years ago, modern humans existed side by side with their closest hominid species, Neanderthals.  (Neanderthals are classified as a subspecies of homo sapien, so technically, we are the same species.) These two races of humans were running around Europe competing for resources for tens of thousands of years before the Neanderthals went extinct about 30,000 years ago.  Apparently there was some interbreeding in the mean time, the traces of which survive in modern humans' DNA.  So most modern humans are between 1% and 4% Neanderthal.  The average 23andMe user is 2.5%. 

It turns out I am 3% Neanderthal, which puts me in the 96th percentile!  When I told my wife, she couldn't stop laughing.  Apparently, many many aspects of my personality suddenly make sense. Frankly, I'm not surprised either.  It's no wonder I adopted the paleo diet so enthusiastically.  I'm practically a caveman.  

Does anyone remember the old Saturday Night Live skit called "Unfrozen Caveman Lawyer"?  That's me.  I use my caveman common sense to appeal to the jury's simpler sensibilities   

Picture from

Another reason people sign up for 23andMe is to discover what disease predispositions they may have.  23andMe tests for dozens and dozens of predispositions.  It turns out I have a slight predisposition for type 2 diabetes.  Apparently, 25.7% of males of European descent will develop type 2 diabetes between the ages of 20 and 79.  My odds are slightly higher, at 32.2%about 6.5% increased risk. 

But genetics are only a part of the equation.  According to 23andMe, environmental factors, such as diet, play a larger role.  So here comes the good news: the lifestyle changes I've made because of ME (and I'm mainly talking about diet here) should help ensure that I don't get diabetes.  So if I ever needed to find the thinnest of silver linings in my struggle with ME/CFS ... BAM, right there.  

The other two diseases of which I showed a slight increased risk (and, here, we're talking about a tiny fraction of a percent) are Restless Leg Syndrome and Multiple Sclerosis.  But since there's nothing I can really do to help stave off these diseases, I won't worry about them.

Epigenetics for PWMEs

The main reason people with ME/CFS get genetic testing is to guide their supplementation and other treatments.  This is sometimes referred to as epigenetics or nutrigenomics.  One brilliant, enterprising person has created a website and program that will upload your 23andMe raw data and provide you with an explanation of all of your genetic mutations (SNPs) that affect your methylation cyclethe body's detoxification mechanism that appears to be broken in most PWMEs (as well those with Autism, Fibromyalgia, Lupus, Chronic Lyme Disease, and MS).  The website is called Genetic Genie

My Genetic Genie results are here

Truthfully, the Genetic Genie results merely scratch at the surface of the treatment protocol necessary to address these issues.  This will take months and months of additional research before I develop a plan to address these genetic mutations.  The good people at Genetic Genie recommend that you study your specific SNP using two sources: a website called and Amy Yasko's book Austim: Pathways to Recovery.  (And of course, they say you should consult a doctor, *wink, wink*).

Apparently, one must not only identify the correct supplements to address his/her genetic mutations, but the supplements must be implemented in the correct order.  It all seems overwhelming right now, but I plan to take it slowly and do it correctly.   

As the Genetic Genie results explain, we were most likely born with our genetic mutations.  We cannot change them.  But, it is possible, through lifestyle changes and nutrition, to change the way genes are "expressed," minimizing the effect of these mutations.  

I still have many unanswered questions about how genetics and the methylation cycle ties into the immune defects common in PWMEs.  They are apparently connected in some way, I'm just not clear how. 

The good news for me is that I can (hopefully) stop guessing which nutritional supplements to take in what amountsthat is, after all, the point of epigenetics.  I could have spent years experimenting with these supplements without even coming close to the right combination.  Now I have specific genetic information to guide me.  

So this is the beginning of a long journey. 

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