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

Cort

Founder of Health Rising and Phoenix Rising
Staff 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?

Naviaux believes the dauer-like state (actually it was the opposite to Dauer - same metabolites - different response) may have been entered into because of an infection but he's not seeing the kinds of metabolites that he sees in infection. I think it is possible that this is a different way of coping with infection but both Davis and Naviaux suggested that antivirals should be not used unless there was a clear sign (PCR) of infection.

So at this point I think he believes infection at one time pushed ME/CFS patients into the state but that in general it doesn't exist anymore.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff 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.
Great idea - that would be very helpful
 

h3ro

Active 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.

Yes. It makes complete sense to reject participants who don't have a proper diagnosis.
 

PamJ

Active 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.

That would be great If we could get a discount for 23andme. I wonder if I could use my HSA (health savings account) to pay for it??
 

BusyTVI

New Member
I'm a "neanderthal" as well. Always wondered if that had anything to do with my health, and have used it as a joke that the 4% was fighting with the other 96%. I was early to 23&Me. Thank you to the poster who listed the helpful sites for understanding the other pieces other than what 23&Me combed through (small portion). But being early to the site, I did get a lot of information that is not available due to FDA actions currently. Hopefully that will be resolved. I emailed the study and am hoping they would like to have data. The only glitch is that I carry a dual diagnosis of ME/CFS and Fibro. Fingers crossed! any thing to help the cause over the long haul.
 

jsuzor

Member
I don't get the Neanderthal conversations. I'm guessing it's a joke or belief in evolution. DUH!
I would love to do the 23 and me, because half of me is a mystery. Hopefully, someday I can. So, there are two things that eliminate me from the study. The cost of 23 and me, and I don't have a computer, however I do have a Smartphone. I have also heard that Nancy Klimas works with my insurance. Does anyone know the ph numb for appt's, or how long of a waiting period there is? I live in FL, and have been on Acylovir for HHV-6 for over two years. During that time I never caught a cold. Now my white cells are low for the first time, and I caught a cold. I decided to stop Acyclovir since it may be causing the white cells to drop according to what I read online. I am drinking Aloe Juice in place of Acylovir for now. Sorry for the ramble.
 

Gamboa

Member
My entire family plus my husband did the 23and me genetic analysis over 2 years ago. We all had about 5% Neanderthal DNA. I think that might be the norm.

I sent my results into Nancy Klimas' study when it was first announced and I can't wait to see the outcome of this study.
 

Tina

Well-Known Member
Regarding neanderthal status.... according to 23andme I "have fewer Neanderthal variants than 60% of 23andMe customers." I am guess that everyone putting their numbers mean "than 23andme customers." Maybe this says something about the population that is utilizing 23andme as well?
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I don't get the Neanderthal conversations. I'm guessing it's a joke or belief in evolution. DUH!

I would love to do the 23 and me, because half of me is a mystery. Hopefully, someday I can.

So, there are two things that eliminate me from the study. The cost of 23 and me, and I don't have a computer, however I do have a Smartphone. I have also heard that Nancy Klimas works with my insurance. Does anyone know the ph numb for appt's, or how long of a waiting period there is? I live in FL, and have been on Acylovir for HHV-6 for over two years. During that time I never caught a cold. Now my white cells are low for the first time, and I caught a cold. I decided to stop Acyclovir since it may be causing the white cells to drop according to what I read online. I am drinking Aloe Juice in place of Acylovir for now. Sorry for the ramble.
23andMe tests how many gene variants you have that trace back to Neanderthal times. It's actually a pretty small part of our DNA...

It would be great if someone or some people could subsidize the cost of the test for those - probably many people - who can't afford it. The Ancestry.com test is somewhere around $100 and I think the 23andMe test is about $200.
 

J.A.

Member
Don't be concerned about having Neanderthal DNA. 23andMe says that almost all of us have it. Exceptions may be those with African heritage. If you Google "23andMe Neanderthal percent" you will find more info. I also agree that it would be nice if the cost could be subsidized. It has doubled in the last few years. 23andMe had discounts on Fathers Day. Watch around the holidays & you may be able to get a discounted price.
 

lynda70578

New Member
Hi Cort, great article ! Just wanted to mention that I have CFS and also Crohn's disease. I read an article (link below) which indicated that Neanderthals suffered from Crohn's amongst other things. I am trying to transfer my DNA results from Family Tree DNA to 23 and Me, which I understand is possible to do so thanks again and keep up the good work.

http://www.dailymail.co.uk/sciencet...t-human-cousins-suffered-modern-diseases.html

There's also a fascinating report here too https://www.sciencenews.org/article/neandertal-dna-may-raise-risk-some-modern-human-diseases
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Thanks.. Very interesting!

If humans have between 1.5 and 4% Neanderthal DNA - I must be up around 4%...Interesting that some of the genes are pathogem and immune related. It's interesting about the allergies too; I don't have a problem with allergies but eotaxin keeps showing up in studies.

Thanks for the link :)
Some of the most Neandertal-rich regions of the modern human genome are those that contain immune system genes. There’s a good reason for that. “Of all the challenges, forces and threats humans have faced over the course of evolution, pathogens have been one of the greatest,” says Lluis Quintana-Murci, a population geneticist at the Pasteur Institute in Paris.

Genes involved in the body’s first line of defense against pathogens are under strong evolutionary pressure not to change, Quintana-Murci and colleagues report in the Jan. 7American Journal of Human Genetics. Some of the genes under the strongest pressure are Toll-like receptor genes TLR1, TLR6 and TLR10. Mutations in those genes, which help detect pathogens and coordinate inflammatory responses, could lead to severe, life-threatening diseases, he says.

But there’s a conundrum: In modern humans, these genes would have had to change to deal with new pathogens that humans encountered outside of Africa. It would have taken humans thousands of years to build up the right mutations. Interbreeding with Neandertals may have provided a shortcut to immunity without risking life-threatening mutations, Quintana-Murci surmises. Neandertals had been living with European pathogens for hundreds of thousands of years, gradually accumulating helpful tweaks to ward off the pathogens, but to not overreact and produce strong inflammation that could kill an infected person, he says. Those TLR genes were some of those most often inherited from Neandertals, the researchers found.

“Perhaps spending a night or two with a Neandertal was a small price to pay for getting thousands of years of genetic adaptation,” Capra said at the AAAS press briefing.


Kelso’s group took a closer look at what the ancient genes are doing for present-day people. The Neandertal versions don’t change the TLR genes themselves, but change activity of the genes, Kelso’s group discovered. The TLR genes are more active in people with Neandertal core haplotype III. Those people are less likely to get infected with the ulcer-causingHelicobacter pylori bacterium. But the advantage comes with a cost: Those people are more prone to allergies, the researchers found.

“We can’t really blame Neandertals for all the diseases we have,” Capra said, but, on the whole, the ancient DNA probably isn’t doing modern people much good.

Hi Cort, great article ! Just wanted to mention that I have CFS and also Crohn's disease. I read an article (link below) which indicated that Neanderthals suffered from Crohn's amongst other things. I am trying to transfer my DNA results from Family Tree DNA to 23 and Me, which I understand is possible to do so thanks again and keep up the good work.

http://www.dailymail.co.uk/sciencet...t-human-cousins-suffered-modern-diseases.html

There's also a fascinating report here too https://www.sciencenews.org/article/neandertal-dna-may-raise-risk-some-modern-human-diseases
 

Forebearance

Well-Known Member
I'm worried about one thing in this study. Their questions didn't allow for a patient who is homeless (living in a tent or camper or hotels or vacation rentals or etc.). When they asked things like "Do you own a refrigerator?" I didn't know what to answer. No I don't OWN a refrigerator. But did they mean am I around a refrigerator? Then yes.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I'm worried about one thing in this study. Their questions didn't allow for a patient who is homeless (living in a tent or camper or hotels or vacation rentals or etc.). When they asked things like "Do you own a refrigerator?" I didn't know what to answer. No I don't OWN a refrigerator. But did they mean am I around a refrigerator? Then yes.
t is a weird question because some rentals come with refrigerators....but they are pretty specific with their words so I guess they meant what they asked.
 

Sue Stevenson

Active Member
@Katie I was wondering too about the Ancestry one. Seems to just do a general test without giving the indepth breakdown of 23andme?


I hope peeps don't get caught out with this and order the ancestry test thinking they're getting more thsn they are
 

Tanja

New Member
I sent my saliva sample to 23andMe a couple of years ago and had my raw data sent to LiveWello.com I did the testing to find out if I had the 677 methylation defect/variant which I do have (+/+ homozygous). Through LiveWello you can pull up huge amount of information on your DNA. I found that I have 4 out of the 5 common CFS genes that have been identified many times in recent studies. Finding a practitioner to interpret and direct treatment is a different story. I've been to two practitioners who don't understand CFS very much/at all, more informed on methylation, but you really need to put all of this information together to create a good individualized treatment plan. It's great to have all this data, but unless someone can sit down with someone and tell you what to do with it, it's just data and charts. I hope Dr. Klimas will be able to actually use it for individualized treatment sometime soon.
 

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