What resources exist worldwide that hold genetic data on people with ME/CFS?

Andy

Andy

Senior Member (Voting rights)
Are any forum members aware of any other databases of genetic information for people with ME/CFS (however defined) in existence other than;

UK Biobank
Lifelines
FinnGen
Mass General Brigham Biobank
Michigan Genomics Initiative Biobank
Estonian Biobank
Million Veteran Program

Thanks for any suggestions made.
 
There are commercial outfits. Depending on what you want, there might possibly be some utility in contacting them. Members here might have more information.
  • 23&Me (of course has new ownership now, issues with coverage and quality, self-reported diagnosis. Nancy Klimas has some data from people with ME/CFS.)
  • Invitae, Blueprint Genetics. There's an outside chance that some of their panels look at some variants of interest for ME/CFS. Some of the ME/CFS clinicians in the US might be sending their patients off to get genetic screening done.

These are the cohorts the Zhang study used - noting these for completeness.
We conducted whole-genome sequencing (WGS) on the same platform for N = 1,075 individuals (N = 464 ME/CFS patients, N = 611 negative controls) from three ME/CFS cohorts (Fig. 1A; Methods): (1) a Stanford cohort that we assembled (N = 208 cases, N = 534 controls; see methods), (2) a UK CureME cohort (N = 190 cases, N = 30 controls), and (3) a Cornell cohort (N = 66 cases, N = 47 controls).
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There's the dutch genetic data from Lifelines (not sure how accurate or whether yet accessible). I also recall the Austrians doing some genetic work but not sure how far they've gotten.

Apart from the commercial data Hutan mentioned there's also NIH Genomic data in the All of Us Research Program, but I don't know what that includes. I suppose it might also possible that some of the genetic studies on Long-Covid happening in countries where's there's more ME/CFS research (such as Germany) might also additionally include some ME/CFS data.
 
According to the ME pedia
"Nancy Klimas is part of the Institute for Neuroimmune Medicine's ME/CFS Gene Study" which aims to "create a one of a kind genetic database for ME/CFS

Not sure if this turned into something as it has a broken 2019 citation from Nova Southeastern University but under her page a genomic study is still mentioned.
 
Liz Worthy at UAB had a SolveME funded project looking at WGS in ME/CFS
solvecfs.org

Elizabeth Worthey, PhD and Camille Birch, PhD - Solve ME/CFS Initiative

“Whole genome sequencing and analysis of ME/CFS”PI: Elizabeth Worthey, PhDHudsonAlpha Institute Home LIZ WORTHEY AND CAMILLE BIRCH “Whole genome sequencing and analysis of ME/CFS”PI: Elizabeth Worthey, PhDHudsonAlpha Institute Working with Camille […]
solvecfs.org solvecfs.org

Here is her LinkedIn profile
www.linkedin.com

Liz Worthey - UAB School of Medicine | LinkedIn

Experienced leader with broad expertise in Human Genetics, Genomics, Data science, and… · Experience: UAB School of Medicine · Location: Birmingham · 500+ connections on LinkedIn. View Liz Worthey’s profile on LinkedIn, a professional community of 1 billion members.
www.linkedin.com www.linkedin.com
 
V.R.T. said:
So they pivoted to WGS then. Am i right in thinking it's more sensitive or specific? I remember Chris Ponting posting something showing the evidence of combining both WGS and GWAS.
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This might be the thread you're thinking of. Also, this website discusses the difference. Basically, GWAS looks only at the most common variants, so it could miss a lot. WGS looks at the whole genome, and also looks at different types of mutations that a GWAS doesn't.
 
V.R.T. said:
Yes I heard rumblings about this happening a little while ago? Took them long enough. Anyone have any solid info?
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Best I can tell, no one has any solid info about RECOVER. They have newsletters, seminars, media outreach, but very little of it is actually informative. Most of the useful info I have seen came from patients involved in it doing their own outreach. Most of it quite critical.
 
rvallee said:
Best I can tell, no one has any solid info about RECOVER. They have newsletters, seminars, media outreach, but very little of it is actually informative. Most of the useful info I have seen came from patients involved in it doing their own outreach. Most of it quite critical.
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It is bizarre how little transparency there is for such a large and expensive project. Or perhaps it isn't...
 
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