The biggest ME/CFS study ever – will soon close its doors to participants.

DecodeME is the biggest, grandest ME/CFS study ever. It’s not just that it’s big (25,000 people) that makes it unique – it’s what it’s trying to do. DecodeME is a genome-wide association (GWAS) study that is looking for small changes in genes that may open the window to ME/CFS.

We’ve rarely had GWAS studies before for the simple fact that they have to be really large to be effective. The biggest one ME/CFS has had so far – a 2,500-person Scandanavian/UK study – was able to point the finger at some chromosomes but wasn’t able to pluck out any genetic risk loci because it wasn’t statistically powerful enough. The authors believed they would need 10xs more samples to actually get at the genes that are opening the door to ME/CFS.  And here we are with  DecodeME’s projected 25,000-person GWAS study. Nice!

What does GWAS do that other studies can’t? These huge studies allow researchers to zero in on genetic risk factors that can definitively point an arrow at the core aspects of a disease. Here’s what former NIH Director Francis Collins said about them.

“GWAS, or Genome-Wide Association Studies, are responsible for the deluge of discoveries in terms of the genetic risk factors for common disease that have been pouring out of research labs recently … if you’re successful … it allows you to zero in on a place in the genome that must be involved in disease risk.”

A recent review, “Benefits and limitations of genome-wide association studies”, concluded that GWAS studies have “successfully identified risk loci for a vast number of diseases and traits”.

GWAS Pluses and Minuses.

They’ve also often implicated “genes of unknown function or of previously unsuspected relevance”, which after further study, have uncovered “novel biological mechanisms”.

The DeCode ME Study

Without GWAS, you’re basically throwing darts at a million or so genetic polymorphisms in the human genome. With GWAS, you get answers. DecodeME didn’t mince words when they said that they’d chosen this approach because:

“significant differences between the DNA of people with ME/CFS and healthy controls must reflect biological causes of the illness.” and that they expected to find “dozens or hundreds of DNA differences that tilt the balance one way or another, changing someone’s risk of having ME/CFS.”

That’s exciting stuff! The DeCode ME study has the potential to get at core aspects of ME/CFS – aspects that have been eluding us for decades – in a way no other study can. We don’t know what DecodeME will find but we do know that GWAS studies play an essential role in understanding disease. Now that we finally have one – let’s make the best use of it.

Window Closing

DecodeME has the funding for 25,000 participants but right now has 20,000 participants. That’s a lot of people, but it’s still about 25% short of the magic 25,000-person number that one study projected that we need.

Actually, the study is not really at 20,000. Since 4,000 of the 20,000 genetic test kits that have been sent out had not been returned by the time Decode ME sent its recent letter out, DecodeME is actually at around 16,000 participants – almost 10,000 people shy of the magic number – with only a month and ten days to go.

The first request then is that people who have the spit kit mail, please mail it back. The second request is if you haven’t signed up, if you, or someone you know, are 16 or older, live in the UK, and have a diagnosis of ME/CFS, please participate in the study. All you have to do is to fill out a questionnaire (!) but you need to do so by 5 pm on November 15th.

From what I can tell, most people who fill out the questionnaire are also given a spit kit – you just spit and mail. Those kits must be back to DecodeME by January 31st.

So again, if you, or someone you know, are 16 or older, live in the UK, and have a diagnosis of ME/CFS, please join the Decode ME/CFS study here and help make history. The researchers have done their part in getting this $4 million study together. Now let’s do our part. Let’s have this study be as big, powerful, and insightful as possible. Our health could depend on it.

Please join the Decode ME/CFS study here.





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