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

Tamesin

New Member
I'm in the 97% highest in Neanderthal genes, too! When I first did my 23andMe test two years ago, I wondered whether that might be part of my problem! There was a reason the Neanderthals died off, after all!
 

Erin

New 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.

[fright]View attachment 2020 [/fright]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 Ancestry.com 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, ancestry.com 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.)

[fleft]View attachment 2022 [/fleft]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 MECFSGenes@nova.edu 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 MECFSGenes@nova.edu
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.

[fright]View attachment 2020 [/fright]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 Ancestry.com 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, ancestry.com 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.)

[fleft]View attachment 2022 [/fleft]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 MECFSGenes@nova.edu 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 MECFSGenes@nova.edu
Thanks for the heads up! I've already started the survey and am waiting for the DNA kit!
 

Megan K

New Member
I have also used 23&me and livewello ,as suggested by dr Rey who works with klimas. It cost $20.00 with livewello for raw data interpretation health reports and costs extra per year for other specific reports. Cort do they have a number on how many participants so far? Thank you so much
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I'm in the 97% highest in Neanderthal genes, too! When I first did my 23andMe test two years ago, I wondered whether that might be part of my problem! There was a reason the Neanderthals died off, after all!
Another one! Maybe we're just not ready for the modern world....
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I will ask....I'm a little afraid to ask actually but I will ask. thanks for the tip on livewello. I'm going to do it! I will report back :)
I have also used 23&me and livewello ,as suggested by dr Rey who works with klimas. It cost $20.00 with livewello for raw data interpretation health reports and costs extra per year for other specific reports. Cort do they have a number on how many participants so far? Thank you so much
 

LondonPots

Active Member
I wish I could afford it! Three, maybe four people in my close family have ME/CFS or similar. Three generations – it’s got to mean something. Any researchers interested?
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
The Bateman Horne Center is also doing a genetic study and so is Simmaron. Simmaron is looking, I believe, at families just like yours. Hopefully something will pop up that will relate to you and your family.
 
The Klimas study site says they will take both 23andme and the ancestry.com results. Considering that they must get usable data from both how is the 23andme any better for someone to take for this study? If the ancestry.com is acceptable and it is half the price can I go with it and be sure that there will be enough medical info from it to make it worthwhile for the study?
 

EmpathAnonymous

New Member
Joining the party here... I've got 316 Neanderthal variants - >95%
Thank you Cort for the heads up - I just sent my email request to participate. Hoping to be qualified.
Three things:
  • I've used Gentic Genie (already noted) which has limited reports. I'm currently using livewello.org which I recommend. I've not tried Promethius.com so can't comment.
  • Through Livewello I learned I have 11 mutations on the vitamin D receptor sites, which my CFS dr has treated accordingly.
  • Regarding being Neanderthal, there's a fabulous PBS series, "First Peoples" and episode 4 (original air date = 7-1-15) paints a decent picture about some the of inherited qualities we have from their genetics. I highly recommend it for those who have the resources to find it.
I hope to be more active here soon. After 18 years of being ill, I just had a Disability hearing in early September. It's quite difficult to get better when all the focus is on simply proving you're sick. : (
 

EmpathAnonymous

New Member
I just completed all surveys and downloaded my genetic information.
The Environmental surveys concern me since I've had CFS for 18 years and had to move in with my 80 year old mother just 3 years ago - so her 10 year old house has nothing to do with environmental factors. (I grew up with a power line tower, literally next door and a basement that flooded every few years which won't show up in a survey.)

Oops on my prior recommendation... it's Livewello.com, not org. Cognition symptoms are my worst issue.

It seems the COMT SNP is related to pain. I have more fatigue and cognition issues and not a high degree of pain (relatively). I hope there will be some findings on the gene study for that, so there is more clarity and with time, treatments that differentiate between the vast differences in symptoms of patients.
My experience, especially with getting Disability for CFS, is that doctors, attorneys and judges all talk about pain as the common denominator, at least as a disability, and rarely understand the disabling aspect of the cognition limitations and fatigue.

Glad to not have great pain of course and much compassion for those that do... just tired of being misunderstood.

Anyone else check out the SNPs related to CFS - remind me, per the article on the Australian research into CFS genetics that was in Health Rising maybe 6 months ago?
 

Merry

Well-Known Member
My 23 and Me report, which I got yesterday, informs me that I have more Neanderthal variants than 97% of 23 and Me customers. I have uploaded the raw data to the gene project at Nova and completed the surveys.

My mother was chronically ill with what I'm sure was ME/CFS. My 34-year-old son has been ill since last September and has had a tentative diagnosis of ME/CFS. I'm in my 49th year of illness. So three generations. But I don't have any evidence -- no family stories -- that suggests that anyone in my grandparents' generation (or earlier) was ill.

By the way, 23 and Me is running a sale ($20 off) which ends the 18th of June, Father's Day in the US.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
My 23 and Me report, which I got yesterday, informs me that I have more Neanderthal variants than 97% of 23 and Me customers. I have uploaded the raw data to the gene project at Nova and completed the surveys.

My mother was chronically ill with what I'm sure was ME/CFS. My 34-year-old son has been ill since last September and has had a tentative diagnosis of ME/CFS. I'm in my 49th year of illness. So three generations. But I don't have any evidence -- no family stories -- that suggests that anyone in my grandparents' generation (or earlier) was ill.

By the way, 23 and Me is running a sale ($20 off) which ends the 18th of June, Father's Day in the US.
49 years!

Thanks for mentioning the sale. :)
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I just completed all surveys and downloaded my genetic information.
The Environmental surveys concern me since I've had CFS for 18 years and had to move in with my 80 year old mother just 3 years ago - so her 10 year old house has nothing to do with environmental factors. (I grew up with a power line tower, literally next door and a basement that flooded every few years which won't show up in a survey.)

Oops on my prior recommendation... it's Livewello.com, not org. Cognition symptoms are my worst issue.

It seems the COMT SNP is related to pain. I have more fatigue and cognition issues and not a high degree of pain (relatively). I hope there will be some findings on the gene study for that, so there is more clarity and with time, treatments that differentiate between the vast differences in symptoms of patients.
My experience, especially with getting Disability for CFS, is that doctors, attorneys and judges all talk about pain as the common denominator, at least as a disability, and rarely understand the disabling aspect of the cognition limitations and fatigue.

Glad to not have great pain of course and much compassion for those that do... just tired of being misunderstood.

Anyone else check out the SNPs related to CFS - remind me, per the article on the Australian research into CFS genetics that was in Health Rising maybe 6 months ago?
I will try Livewello :)
 

Not dead yet!

Well-Known Member
Got my 23andme data...
Neanderthal variants

299
This is more than
81% of 23andMe Customers

My husband is very amused. He's taken to calling me NLU... Neanderthal Like Us. I wish I had the energy to give him noogies. :playful:

I also have the elite power athlete gene, homozygous for actin-3.... y'know, it just might be this that makes me so sensitive to metabolic stress. Other athletes have noticed that once you stop training, your health, joints and everything turns bad. Maybe I need some forced bed rest so I can rebuild on a firm foundation. I've had that thought before.

I mean this gene: https://www.ncbi.nlm.nih.gov/pubmed/20699471 (free full text)
 
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Not dead yet!

Well-Known Member
More on Neanderthal variants and how they might affect us.

https://phys.org/news/2016-02-neanderthal-dna-subtle-significant-impact.html

I especially liked the blood coagulation bit. I've already suffered a bout of multiple Pulmonary Embolisms and when they gene tested me, it was negative. But of course, if they didn't look at the Neanderthal variants, because it isn't "standard" yet, then they're looking in the wrong place.

Ever since that terrifying event, I've guzzled Vitamin E and Bufferin, plus lately I added Natto and Serapeptase. I will never again wheeze to breathe and get a stab on each breath. Not if I can help it.

With that said, I think the article, and even the science article, is biased in a negative direction. Although they mention a positive effect on depression, they only focus on the negatives. Plus, I find it unbelievable that they can link it to tobacco use. I mean, first show me a Neanderthal fossil with a tobacco leaf in its cheek and then maybe I'll believe you. Otherwise you'd better have something definitive to back it up. Did anyone else sense a smack of disdain in the articles?

This smells to me of another plot by corporate pharma to use these genetic tests as a tool to sell us drugs. ie. "Do you have lots of Neanderthal variants? Poor you.... you're going to be depressed, so how about some nice antidepressants now? Can't be too careful."

First of all, compare with retroviral DNA: http://phenomena.nationalgeographic.com/2015/02/01/our-inner-viruses-forty-million-years-in-the-making/

Hmm, 100k variants - retroviral dna

1.5k variants - Neanderthal dna

Which of these has more of an effect on our physiology do you think? Are we looking at yet another wild goose chase?
 
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Eset Isadore

Active 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:
I was super proud for the distinction of having the highest percentage of Neanderthal DNA in my family!
 

Eset Isadore

Active Member
More on Neanderthal variants and how they might affect us.

https://phys.org/news/2016-02-neanderthal-dna-subtle-significant-impact.html

I especially liked the blood coagulation bit. I've already suffered a bout of multiple Pulmonary Embolisms and when they gene tested me, it was negative. But of course, if they didn't look at the Neanderthal variants, because it isn't "standard" yet, then they're looking in the wrong place.

Ever since that terrifying event, I've guzzled Vitamin E and Bufferin, plus lately I added Natto and Serapeptase. I will never again wheeze to breathe and get a stab on each breath. Not if I can help it.

With that said, I think the article, and even the science article, is biased in a negative direction. Although they mention a positive effect on depression, they only focus on the negatives. Plus, I find it unbelievable that they can link it to tobacco use. I mean, first show me a Neanderthal fossil with a tobacco leaf in its cheek and then maybe I'll believe you. Otherwise you'd better have something definitive to back it up. Did anyone else sense a smack of disdain in the articles?

This smells to me of another plot by corporate pharma to use these genetic tests as a tool to sell us drugs. ie. "Do you have lots of Neanderthal variants? Poor you.... you're going to be depressed, so how about some nice antidepressants now? Can't be too careful."

First of all, compare with retroviral DNA: http://phenomena.nationalgeographic.com/2015/02/01/our-inner-viruses-forty-million-years-in-the-making/

Hmm, 100k variants - retroviral dna

1.5k variants - Neanderthal dna

Which of these has more of an effect on our physiology do you think? Are we looking at yet another wild goose chase?
Super interesting thought re: the blood coagulation feature - and that it affects your breath. These are prime, inter-related keys for me too.
 

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