It’s a bold idea. Get people with chronic fatigue syndrome to contribute their 23andME or Ancestry.com data and the researchers will do the rest. Nancy Klimas’s project at the Institute for Neuroimmune Medicine at Nova Southeastern University ultimately aims to analyze the genetic data of 10,000 ME/CFS patients in order get at the genetic issues that virtually everyone believes are part of chronic fatigue syndrome (ME/CFS).
The ME/CFS Genetic Database Study has already uncovered one genetic weakness in ME/CFS. With your help, it will uncover more.
A genetic weakness almost surely provided the flint that helped light the fire which plunged so many people into ME/CFS when an infection or some other biological insult occurred. There’s hard evidence that this is true. A 2011 ME/CFS University of Utah study (featuring Lucinda Bateman) concluded there was “strong support for a heritable contribution to predisposition to Chronic Fatigue Syndrome“. That study found elevated risks for ME/CFS even among third-degree relatives; i.e. great grandparents and second cousins (!). Since only 1/8th of our genetic material is shared with these relatives, finding that ME/CFS was showing up even in them suggests a strong genetic component is present – it simply needs to be found.
That’s what “The Great Chronic Fatigue Syndrome Community Gene Project” (my name for it) otherwise known as the “ME/CFS Genetic Database Study” from Nancy Klimas’s group at Nova Southeastern University is attempting to do. The beauty of the study is that it’s a community sourced project – you provide the data – they analyze the results.
First you get your genetic results – you get to find out (if you want to :)) some of your genetic weaknesses – and have a resource you’ll be able to mine for years. As the science proceeds and different genetic issues in ME/CFS and FM become known, you’ll be able to assess whether you have them and if there’s anything you can do about them. It’s a two-for-one deal; your genetic data gets to benefit you and contribute to the end of ME/CFS.
Take the MTHFR gene that regulates folate metabolism, DNA/RNA synthesis and repair, and brain functioning. Because MTHFR mutations can cause similar symptoms (fatigue, irritability, brain fog, anxiety, sleep issues, pain) to ME/CFS/FM patients, it’s been suspected to cause problems in ME/CFS for years. Unfortunately, there’s been no hard evidence of this is so.
MTHFR Mutations Found
It’s taken just 450 people, however, enrolling in the “Great ME/CFS Community Gene Project :)”, aka The ME/CFS Genetic Database Study, for it to produce its first result. The study has found evidence for a high prevalence of a heritable defect in the methylfolate (MTHFR) gene in ME/CFS.
That’s pretty big news. We suspect, after all, that metabolic problems are present in ME/CFS and now we have evidence of a problem with folate metabolism. If you have this problem, and you’re not taking the right kind of folate, you’re out of luck. Plus, folate metabolism also affects the blood vessels and methylation. We suspect blood vessel problems are present, and epigenetic studies suggest low levels of methylation (hypomethylation) run rampant in chronic fatigue syndrome (ME/CFS).
An MTHFR Study Begins
Christopher Lattimore, the leader of the study, has found a high enough prevalence of people with ME/CFS with MTHFR mutations to start a study. People in the study will take a prescribed supplement for three months and report back on their symptoms.
This is just the beginning. So far, 450 people have provided their genetic data for the project. (The project wants 10,000 genetic signatures.) If it took just 450 people to uncover an MTHFR defect, imagine what we could find with 1,000 genetic samples or 5,000 or 10,000. My guess is that 10,000 people in the U.S. with ME/CFS have already gotten their genetic analysis done – we just need to find them.
You don’t need a doctor’s prescription to get your DNA data. Simply enroll in 23andME or Ancestry.com and then download your genetic data to the study’s safe, encrypted database. (23andME provides two data plans. With the exception of the sex chromosome data in the more expensive plan, Ancestry.com provides the same data to Dr. Klimas). Not only will you contribute to helping solve this disease but you’ll probably also find out some interesting and possibly useful stuff about your genes. I regularly get updates from 23andME about potential new insights into my genes.
ME/CFS Community Breaking New Ground
Have ME/CFS become the first disease to uncover its own genetic roots.
When you don’t get the big bucks, you have to find other ways to get the work done. Kudos to Dr. Klimas and her team for finding an innovative new way to get research done. This is the first crowd-sourcing effort the team knows of that’s attempting to understand the genetic roots of a disease.
It’s a great opportunity to make the NIH and other institutions sit up and get who we really are. We’re not malingerers. We’re not complainers. We’re not just mad. We’re smart, effective people who are so committed to the end of this illness that we’re taking matters into our hands. How many disease communities can say that?
Let’s blow up their conceptions of ME/CFS and make ME/CFS the first disease community to uncover its own genetic roots. Maybe that will get them to move.
The ME/CFS Genetic Database Study
Participation for this study requires: a computer with an internet account and an email account. If you qualify for the study and agree to participate, you will provide us with your raw genetic data to compile in a one of a kind, ME/CFS Genetic Database.
In addition to providing us with your genetic data, participants will complete online surveys at your own pace. As all communication is done via a secure email server, NO travel is necessary and participation can be done in the comfort of your home!
Please visit the link to the official study website to find all the information you may need: If you are interested in participating or have any questions, send an email to MECFSGenes@nova.edu.
MTHFR Mutations Explained by Joe Leech Msc
(Not Associated with the ME/CFS Gene Data Project)
I did Ancestry .com. It did not provide me with MTHFR info. Only possible connections of areas where ancestors may have been. Unfortunately it wasn’t much help to me. How can this help the study?
I’ll put that question to Christian. (I wonder if the MTHFR gene is on the sex chromosome (???)) and let you know…The Ancestry.com test definitely is helpful, they just get a bit more data from the 23andME test. If you have your data please send it in.
I wrote a blog on this about a year ago, got my testing done – thanks to some financial help from someone – applied to be in the study – and I just found out I forgot to give them my data! (!!!).
If in Canada, depending what DNA company is used it may not provide medical information. I did ancestry DNA first and just got heritage information. I re-did the sample with 23andMe and they gave heritage and medical but not sex genes.
Thanks for this Cort. I never would have known about the study otherwise!
When is the deadline to turn your info in?
It’s on chromosome 1.
It’s on gene 1. You can look it up through your raw data on 23&me. On AncestryDNA you have to buy an analysis from someone else.
Apparently all the studies provide SNP data but its hard to identify. Did you try Livewello? I believe that if you run your genetic data through that program it will provide you data on SNP’s.
Livewello and/or Promethease. Promethease notified me that as of Sept. 6, 23andMe will not allow direct uploads to 3rd party apps; individual raw data will have to be downloaded onto your computer and then uploaded. I’ve gotten nothing from 23andMe nor Livewello about this policy change, but it has made the news: https://www.cnbc.com/2018/08/23/23andme-is-telling-developers-that-it-plans-to-shut-off-its-api-in-two-weeks.html (You might find the 23andMe blog on MTHFR gene variants interesting/controversial.)
At least there’s an easy workaround.
Yes, I just read that. 23andME has concluded
https://blog.23andme.com/health-traits/our-take-on-the-mthfr-gene/
The takeaway
That’s one of the reasons for the Klimas study – to see if MTHFR variants really do make a difference. Even a negative result if unwanted, still has a positive outcome: if the result is negative then people with ME/CFS can probably not worry about these variants and not spend money trying to fix a problem that’s not there.
Good for 23andME for being an honest broker in this case.
I’m wondering if CRISPER will help cure this problem. I have my dna through 23&me . I’m in the middle of a years long flare up, so my brain is in a fog. Are 23&me already testing for this?
This is Chris Larrimore. These sites do not actually look at your entire genome, instead they look at something called SNPs. These are single nucleotide polymorphisms. Essentially, they are individual DNA connections. SNPs are located before and after a gene in the long strand of DNA. Research has been finding connections between changes in these SNPs in certain regions of the DNA that are associated with things like heritage or even health!
The NSU study is using this method of gene testing, far cheaper, to search for abnormalities in the genome. While we can’t look at the gene directly, we can find changes that are not seen in “healthy controls”.
If you contact these companies (ancestry or 23andME) they won’t provide you with assessments, instead they use computer programs that really only search for heritage links. At NSU INIM we are gathering these files from people with ME/CFS and people without (for comparison) and we are searching for irregularities and generating individual studies out of this database.
I plan to have my genome sequenced to help the Stanford group. It’s from Genos. In part it’s “A CLIA/CAP validated germline discovery pipeline coupling best practice open source tools with the superior SNP performance of our proprietary algorithms.”
Will this data be what Klimas needs?
You do have what you need from the ancestry.com data, but you need to process the genetic part through https://promethease.com/
You simply upload the zip file from ancestry.com to promethease (negiligible fee) and they quickly send you your genetic health file with LOTS of information on your predispositions to certain health problems.
This is what I sent to Klimas’ project.
Thanks for the info! I would prefer Ancestry to 23&me
I contributed to the study through ancestry. I explicitly did not want to know more about my health risks (from 23andme) and appreciate the bigger cousin pool on ancestry. The only information you provide Dr. klimas with is a download of the raw dna data from ancestry.com. You fill out forms with Dr. klimas online first. Under the dna tab on your ancestry page hit dna results summary. Then hit the cog image in the upper right hand corner. Scroll down from there to where it says download rAw dna data. Hit that. Enter your ancestry password, check box, and hit confirm. This sends you a copy of the raw dna data. You’ll have 48 hours to send this file to Dr. Klimas. Do NOT open the file, or you’ll have to download it all over again. Just send it. Hope that helps. She interprets the data to find mutations.
Deb, that is a great description of how simple it is to participate in Dr Klimas’ study starting with an Ancestry DNA file. I did not realize I am part of 450 people who shared the DNA file. I thought many more patients would share with her. Family history is my interest, and why I had the test. I hope she can learn a lot from more patient DNA files.
Great help, Deb. I’m going to use your process to participate.
Deb, have you noticed any improvements in your symptoms & what of these has helped you out now? thanks
Sorry Not a fan Have had ME for 30 years. And degree in critical thinking and logic. Confusion in confusion out. Unless one seperates the paitents before a study thereal scientific benefits are lost.Convoluding ME a known disease with a documented history and tests to diagnois ex Spect scans with the yet unknown bag of various illnesses given tge cover up name CFS, no progress wilk be made. This IS precisely how no improvments have been made in the science of these conditions in OVER 30 years.
PsuedoScience
Follow the Money
The tome to change the approach. Is NOW.
Real science…follow Dr. Hyde’s work and advice.
The problem is that there isn’t any money to speak of. Researchers are left to do what they can with almost no funding. If the results look promising, I imagine there will be more work done.
Did you run your raw data through a third party website to see the genetic snps? Ie. Livewello, Promethease, StrateGene etc?
Did you have the full test done? I did and it did provide full gene analysis including mthfr plus others. You have to drill down into the reports. I’d like to contribute to this study with my results if I can
I sent my raw data from Ancestry.com to Promethease.com and they charged $5 to interpret the data.
Take Your DNA and go to Genetic Genie and you’ll find what you need.
FABULOUS!! Thank you for all your efforts on our behalf.
I was one of the 450 who participated in Dr. Klimas’ gene study. I do have MTHFR defect. I have been taking methylcobalamine shots.
What type of folate should I take? Thanks
Someone from the study reported they are taking this: L-5 Methylfolate – Methyl Folate – here’s one link – to a L-5-MTHF product – 1,000 mcg Metafolin by Douglas Laboratories
Cort, please be aware that methylB12 and methylB9 may not be the answer to everyone with MTHFR variations and that in some cases, depending on the gene variations in the pathways surrounding MTHFR and depending on the biochemistry balance at a certain point in time, taking methylB9 or methylB12 may be countraproductive.
The reason I am writing this comment is because I found out the hard way.
Could I suggest to have a look at the work done by Dr Ben Lynch? It may be worth getting in touch with him.
He used to be a big supporter of methylB9 for the MTHFR variations but he moved away from this support. At this moment he is a big fan of glutathione and of supporting glutathione recycling.
Does anyone know if this product mentioned contains any animal products with regards to Alpha-Gal ingredients & any form of sugar? Can it be bought on Amazon or where? thanks, Cort
@Aiden: the product mentioned is known under several names: Methylfolate, 5-MTHF or methylB9 are all different names for the same thing. Please be very careful if you want to try this product and start at a very very very low dose. Also see my comments above and read this: http://mthfr.net/preventing-methylfolate-side-effects/2014/11/26/
Thanks very much for that Moirs.
I have tried taking methyl folate and for two weeks before that i took methyl b12 so that i didn’t get methyl blocked, however the b9 instantly gave me migraine, lethargy and confusion. I’d love to know what do do now 🙁
Moira, while you’re correct that some people have difficulty with mb12 and methylfolate, they’re usually able to find eventual benefit if they start very low, and very slowly increase the amounts.
As for Dr. Lynch, he still fully supports — and sells — methylfolate and mb12 supplements, but says if one has problems with them, then building up glutathione levels will help. Which is the same thing that Rich Van Konynenburg said 10-15 years ago, because methylation startup can cause glutathione levels to drop.
Remember Cort?
Kathryn, are you enrolled in our methylfolate study? Do you mind sending us an email MECFSGenes@nova.edu? If you are in the methylfolate study, you should be discontinuing methylfolate before the study start.
I happened to discover that I had the MTHFR mutation in January (submitted my 23&me code to LiveWello). My doctor said the increased cardiovascular risk didn’t apply to females (despite several indicators from LiveWello that it was, as well as my grandmother having vascular dementia after strokes). Started taking the L-5-MTHF supplement in March, then contacted by the study a couple of weeks ago. I also have the increased risk per gene for Fibro/chronic pain. I think 3 months is too short of time period to see if it help as pwME tend to respond either later or slowly, many times to supplement treatment. I haven’t seen any changes yet, but will continue taking the suppliment to address the increased health risks as well as possibly helping the ME/CFS.
I really appreciate your advice to give supplements / dietary changes / drugs etc. enough time. It can take 4 months to see the effects of LDN, valtrex can take even a year to really kick in and months to see the effects of supplements. Too many times I have quit too quickly I now realize.
I looked up L-5 Methylfolate – Methyl Folate – here’s one link – to a product – L-5-MTHF 1,000 mcg Metafolin by Douglas Laboratories 60 Tablets
Glad you’re in the study – good luck with it 🙂
hey Cort, yes that is a good one and Thorne Research also has a 1,000 capsule. I was tested at OMI and was positive for a C677t mutation. I was told to order the 15 mg capsules from Methyl Pro. I found that dose to be much too high. After doing some research I found out that we have to start low and slow.
Also my B12 levels always test way above high normal and I don’t even supplement. Wish I knew how much B12 my body is really absorbing and have someone local to monitor my methyl folate levels…
When I donated my 23andMe results a year ago to Dr. Klimas’s gene study, I never expected to hear any more about it unless eventually the group published research results. But recently I received an email informing me that I have a MTHFR mutation and asking if I’d be willing to participate in a study. I have agreed to participate. I’m glad to help out. Thanks for the article, Cort.
Good luck Merry! I’m glad the Klimas team is already putting ME/CFS patient’s genetic data to good use. 🙂
Thank you for saying the study contacted you. I am also one of the 450 people in the study and have had severe sudden onset ME/CFS for 20 years. But I was not contacted and take that as a sign that I don’t have this particular mutation.
Hi Deb
I wouldn’t be too sure. I have the MTHFR mutation, found through uploading my data to livewello but I haven’t been contacted by the Nova team.
I’m definitely going to do the 23andMe test and submit my data. I also did the Ancestry one a few years ago and it was just heritage data. And I also signed up long ago for the SolveCFS Blood Bank but was never asked for a sample. I think at this point they are only wanting young-ish blood or those that have only had ME/CFS for, I think it’s 3 or 4 years.
Is it just me (OK, I’m of the ‘older generation’) but did anyone let out a belly laugh at the MTHFR name of the gene? It’s a bit irreverent, but flashback to the 70’s…”Up against the wall MTHFR” gene, LOL.
Yes, yes, yes, Stephanie, yes!! ???
I too, am in the older generation and really laughed when I saw the name for this gene. Had the exact same thought. The genetic code from either source (23&Me, Ancestry) does not state any of this information; it is just a scrambled data stream, which is why I used LiveWello.com to unscramble it. There are several souces online and your doctor should be able to recommend one that is within their group. Out of the online ones, one is under investigation for faulty results due to simplification, some take high level of dedication to use (I have no energy for that), and the one I chose which was the easiest path for me. You can submit the code string into the study (I think original Ancestry doesn’t have the genetic material they need, but as of the past 2? or 3? years it does). I did find out that my daughter doesn’t have this, now to pay for my grandson’s results to be “translated”. If you submit your data stream to this study, they will contact you to be a part of the suppliment study.
You are funny, Stephanie! I am of that generation too and have ME/CFS. We have to get our giggles in whenever w can, right?
You can submit your Ancestry raw file. Ancestry may not display possible health problems for you, but that does not Dr Klimas’ team from using the DNA file to find patterns in M.E. patients. To be clearer, a patient does not need the 23andMe file for it to be useful for the study.
Sigh. New Ground. Many patients passed over this ground a decade or more ago.
I know this doesn’t help you personally and certainly some people with ME/CFS looked at this – probably quite a few – but I never have and I’ll bet many have not – but the research community has never, except for a study in the 1990’s, looked at this. If it finds that subset of ME/CFS patients have this mutation and it’s affecting their symptoms then we have a new biological basis for some of the problems found in ME/CFS. That’s a step forward for ME/CFS research and this disease.
Nobody thinks the MTHFR gene is it for ME/CFS but nailing down a genetic issue that researchers can prove is contributing to it – is definitely breaking new ground.
The new ground that the titled referred to, though, primarily referred to the first attempt perhaps anywhere to use crowd-sourced genetic data to uncover the genetic weaknesses in a disease.
I’m curious how many non-ME folks have MTHFR and other methylation snp issues. My husband, my mother, my kids all have Shoemaker’s “dreaded gene” and honestly, Shoemakers hyperbolics regarding his “dreaded gene” really harmed me.
I have been through methylation work with Yasko and Yasko trained practitioner. I recall that multiple family members also had supposedly significant methylation snps as per Yasko and 23andme testing.
I am personally not sure how helpful this is. It seems a step backward to me. Crowd-sourced genetic data is only meaningful if it’s an accurate reflection of a divergence significant to us.
I have barked up so many trees, I am traumatized from the barking and the trees. Traumatized. I’m not the only one.
I agree about new ground. Seeking Health’s hydroxy-adeno B12 has made an incredible difference in my energy. I’m not 100% yet, but very close.
Both my sis, her son and I have MTHFR mutations. Is this the same study the Lights are doing? Sounds different. We are in the Gene study with Drs. Lights.
Word of caution, you need to know if you are a fast or slow metabolizer. May not need more methyl groups.
Issie
It’s different. You guys are in a more intensive study. I meant to mention actually that two intensive family gene ME/CFS studies are underway. Both have identified families this disease runs in – which indicates again there is a heritable component.
One is in Utah with Dr. Bateman and the Light’s and the one at Stanford is funded by the Open Medicine Foundation and is overseen by Ron Davis.
@Cort My sis and I both have 23&me. We could supply it. Can you see if they want us? Give them my email.
Issie
I’m also of the opinion that you may not need to treat snps that are mutated. It may be a different issue in the circle of methylation that is the concern. I lean more toward Dr. Ben Lynch way of looking at the genes and their mutations. He has a book out about this.
I’m not able to use folate, despite have a snp mutation. I did not do well with methyl form of B12 either. I’ve experimented a lot with the methylation pathways and what some are using with those. Not all are helpful for me.
My very forward thinking specialist had testing done here in Australia for the MTHFR mutations. Yes I have one! We began treatment with hydroxycobalamin and methylfolate some years ago. I was also able to contribute to Nancy Klimas study. I consider myself fortunate to have such a research oriented doctor who really looks at the metabolic cycles in our bodies and explains them and treats issues he can.
Maggie – am interested to know the name of your Australian specialist. They are few and far between – and I have two sone with ME/CFS of thirty years duration whose doctor is now ill. Are you willing to share please?
I have a wonderful nutritional geneticist who has a doctorate in clinical nutrition as well as a masters in Biochemistry. She is excellent and highly recommend. Let me know if you’re interested.
Hydroxy-adeno B12 from Seeking Health has been a godsend to me. Also have a forward thinking nutritional geneticist who has been rxing based on presentation, traditional and specialty labs, and 23andme. Thank God. I’m feeling well again for the first time in decades. I have heterozygous C677 and A1298C. Was dxed with Fibromyalgia/ CFS before my EDS dx. Looking forward to contributing to the data.
All of the women in my family suffer from ME/CFS, and we have all had our 23andMe done. However when I applied to submit my genes to this study earlier, I was told I was not eligible for the study. I can’t recall why- but it seems a shame because ME/CFS is so prevalent in my family, and I know we all have the MTHFR variations (along with variations to several other key snps!). I think that Bob Miller’s award winning work with chronic lyme patients (noting significant cross over with ME/CFS) is the real trailblazer in genetic research for the chronically ill – he has gone well beyond MTHFR, to look at other biological issues like mtor overactivation, iron oxidation, etc that arise from genetic mutations, and is uncovering some remarkable genetic commonalities among those who are chronically ill.
Thanks for the info about chronic lyme/Bob Miller. I’m going to look into it.
Gemma – when I first did the survey, I was denied also. I knew that couldn’t be correct as I’ve been like this for a VERY long time. I emailed them and received an answer. Basically, I misinterpreted a question (which, I’m afraid, might be happening to others as well). Once I redid the initial survey, I was accepted. Feel free to email me and I’ll forward their response. Janie. janieaddams96 (at) Gmail (dot) com Cheers.
I did a 23&me several years ago. I think there was only this one test. Is this useable? Where to go to find more how to do this? How safe is it to share this info when even the best of systems get hacked.
One last question, what is the percentage of people without CFS that have a mutation in the MTHFR?
Unfortunetly it is high (sorry can’t reference one specific source). MTHFR variationd seem to quite common. It could be a a combination of gene variations (which would include MTHFR) is the factor behind an increased risk of ME/CFS rather than MTHFR alone
That means the original CFS cluster at Truckee High School investigated by Dr Gary Holmes was the most statistically improbable fluke of all time.
Nine out of ten teachers in a single room, all sharing a genetic susceptibility so rare that no doctors in the world could recognize their disease and put a name to it.
what are the odds?
I hadn’t read about this (or maybe I forgot…). Certainly sounds like some environmental cause?
Kira, re Erik’s comment — He thinks it’s Mold that’s the original cause of CFS and the nih scientists ignored the data.
I apologize if this is a repeat but my replies are not appearing. Kira, re Erik’s comment—he believes it to be Mold as original cause of CFS.
I was gifted a Family Finder DNA test. Are they included? Fingers crossed!
Well, me too! A couple of weeks ago I got invited to participate in Christopher’s MTHFR study as I have a mutation too! I first found out about this mutation from 23andme via Livewello and then had a whole exome sequencing and ran it through Promethease where, of course, it showed up again.
Since I had already been taking methylfolate, I am required to do a ‘wash out’ before participating in the study. It will be interesting to see the results of my labs and I was told that in time, the results of the study will be available to us.
Kudos to Dr. Klimas and company for looking into this aspect of ME/CFS!
Just to keep myself up to date on Dr. Klimas’s work, I looked up a very new YouTube video on the computational models they are currently working on. Her team got a big infusion of money from the DOD to study Gulf War Syndrome and they managed to tuck ME/CFS into the study as well. I don’t have the link at the moment, but it shouldn’t be too difficult to locate…
Nancy, re GWS study–I’ve been wondering why that original work headed up by Dr. Garth Nicolson has been overlooked in the schemed of all this new research. Though I’m not certain it was met with favorable acceptance. Here it is: https://gulfwarvets.com/testimony_2.htm
I’m not quite sure where Dr. Klimas fits in to this though—perhaps a different study altogether??
I’m thinking my comments are being filtered out..Certainly hope not. I’ll try this again. The first study commissioned by Congress for GWS is this one: https://gulfwarvets.com/testimony_2.htm I don’t think Dr. K was the original one to discover this phenom.
They’re not! I’ve just been out of WIFI range for a bit. Sorry about the delay!
O.K. here’s that link of Dr. Klimas’s recent research; https://www.youtube.com/watch?v=vEsPWuNNMuU
I think it very interesting and worthwhile to watch!
I don’t know if this is been mentioned above but recently 23andMe has said that they will no longer support M t h f r and also will no longer support compatibility with websites that download your data. maybe this can be verified but I just want to offer a caution in case someone thinks they’re going to get the 23andMe and be able to submit it to the study. It may no longer be possible. However there is a program called genes for good that also will give you your genetic information and perhaps that’s another way to go.
I am going to apply for the study, but privacy issues are a bit disconcerting. Anyone else worried about this?
http://time.com/5349896/23andme-glaxo-smith-kline/
Cort, would you have any insight in whether the genes involved in B12 metabolism will be reviewed as well? I’m very interested to learn whether there is a correlation between MMAB variations, and ME/CFS and am hopefull the study will look into that at one point.
I have fibro and possibly chronic fatigue and the mthfr Gene mutation. I was diagnosed for the mutation by nurse practitioner. Where can I get more information of the gene deficit? I’d like to know more as I know really nothing. Also how do I go about finding out if my 6 year old daughter has it?
In Canadian, the 23 and me the test is $249. U.S.
I am thinking that only people who are pretty well off can afford this test.
Doesn’t that create a S.E.S. skew in your results?
the test goes on sell for around 129.00 in Canada
hopefully those in the UK can also contribute to this?
Do you know if they prefer 23andme or ancestry data?
This will be a self-selected sample of those who can afford DNA testing. However that’s not to say it wont be useful (and I hope to join in) but results will need to have that caveat. Still if results are interesting maybe they can get funds to pay for the testing of other groups.
I wish someone would explain the 70s joke.
And for anyone who had a DNA test for ancestry and didnt get much from it – the Lost Cousins newsletter (free sign up) has a good guide on how to use DNA results.
It was actually from a 1968 song by David Peel called Up Against The Wall. You can view this most irreverent tune on YouTube. Just make sure the kids are out of the room!
I live in the UK and sent my Ancestry results to the study about 2 years ago, having filled in the online forms. I’m sure more Brits would be welcome to take part.
What happened to the RCCX gene abnormality hypothesis? Seems when there are high numbers of familial illness this gene may be implicated. Apparently difficult to get a reading of this part of the genome but it seems like a possibility! There was a long interview on this gene on The Energy Blueprint podcast with Ari Whitten not long ago.
What happened to the RCCX gene abnormality hypothesis? Seems when there are high numbers of familial illness this gene may be implicated. Apparently difficult to get a reading of this part of the genome but it seems like a possibility! There was a long interview on this gene on The Energy Blueprint podcast with Ari Whitten not long ago.
For the ones adamant at trying methylB9 (also called methylfolate or 5-MTHF) please read this first:
http://mthfr.net/preventing-methylfolate-side-effects/2014/11/26/
While I appreciate links to research and informed opinions (where would we be without them, right?) I have to point out that this link leads to an article where the authors supplements are being linked in every other paragraph…
True, I should have pointed that out as well. Thank you for doing so Jo
I plan to have my genome sequenced to help the Stanford group. It’s from Genos. In part it’s “A CLIA/CAP validated germline discovery pipeline coupling best practice open source tools with the superior SNP performance of our proprietary algorithms.”
Will this data be what Klimas needs?
Cort – I’m assuming this is most likely a shotgun approach study, looking across the entire genome for any type of correlation, but do you know if they have the ability of focusing in on specific areas of interest? In particular, I’d be VERY interested to see them zero in on the HLA genes, which have been associated with problems clearing toxins. As you may recall, my wife Lissa and I have been struggling in that area –
https://www.healthrising.org/blog/2017/09/26/me-cfs-chronic-fatigue-toxic-mold-story-lissa/
We’ve both had our HLA gene workups done as part of treatment with our mold specialist and are in the high-risk group. Other research has shown HLA correlations to Type I diabetes and a number of other autoimmune conditions.
Just curious whether you might have any insight or ability to raise this with the researchers.
I don’t know. I would assume as the data grows that they would have the ability to do that. I don’t know about the HLA genes; I’ve heard they’re so tricky but if you were able to get a workup done it’s probably possible. Maybe Christopher could answer that.
Sadly I dont qualify – guess I dont tick enough of the boxes, maybe because I cant tie it to a specific illness/ sudden onset.
They prefer 23andme data as it has more information than ancestry but if you are thinking of buying a test make sure you qualify for the study first.
I will contact 23 and me.
Hi, YaY this is outstanding and quite exciting today it gives me some more hope and a boost of joy. I already did both maternal and paternal gene study a few months back, with the company called Family Tree and when i looked at the FAQ’s for this test on the nova.edu page about this specific study they are compiling,
I found this quote:
“Is there a cost for participating in this study?
The only cost to you is your payment to the publicly available genetic testing site of your choice. There is no cost to the INIM.”
so- are my findings from the testing i had done usable or should I re-do with the 23site? I’m living w diagnosed ME/CFS since 2001 -and on verrrry limited budget but would really like to participate and help in this way
thanks
Bethe
disregard I guess….
was so excited i didnt see the previous Q/A about which companies they will accept
I did 23andMe back in 2007 when they were releasing a lot more medical info to people–before the FDA stopped them. I know they are now releasing more info, but not all of it (I think). I’ve been taking Rich van Konynenburg/Dr. Myhill’s simplified protocol for methylation problems, which came up in my 23andMe genome. I discovered I was homozygous for the C677T SNP, translated for me by some now-lost online service. MTHFR was also mentioned. Obviously, I don’t understand most of this, but I started taking the following protocol about 4 years ago:
* Methylcobalamin 1 mg sublingually
* Methyltetrahydrofolate 800mcg (ActiFolate)
* Pyridoxal-5-phosphate 100mgs (50mgs twice daily)
* Glutathione 250mgs daily
* Phosphatidyl Serine 200mgs (100mgs twice daily)
I can’t say whether this has helped me or not. It may have because my GP tests for homocysteine annually, and mine is not out of range (too high).
I have signed up for the Nova study, and I’m currently in the washout period. So perhaps I’ll find out if it has been helping after 6 weeks or so, when the methylfolate is out of my system.
If anyone is interested, here’s a link that provides more info on the methylation protocol:
http://www.drmyhill.co.uk/wiki/CFS_-_The_Methylation_Cycle
This study sounds wonderful with one caveat. I’m not sure if the situation is the same in the USA or elsewhere in the world but in Australia, having any genetic testing done can compromise life, permanent disability and health insurance coverage. If you are not refused outright, the premiums can be elevated excessively. I hope people are aware of the situation in their respective countries before undertaking the testing.
http://www.abc.net.au/news/2017-11-09/genetic-testing-discrimination-from-life-and-health-insurers/9133878
Ok, I got the email from Nova to participate. My mind is so screwed up…been in bed for over 3 months. I don’t know how to upload my stuff from ancestry or do they want the LiveWello stuff? I still don’t understand the results from LiveWello. Somebody tell me how to upload from my laptop and what they want. Obviously can’t do it from iPad. Thanks. I want my brain back!
I have my 23andMe and will participate. Please tell me how.
You can put the results from “23 and me” into Genetic Genie for a methylation profile.
http://geneticgenie.org/ There is no charge.
Oh, yeah, that was the online site that helped give me a methylation profile from my 23andMe results. Thanks, Betty!
hello, I’m Bernd , and I would like to contribute to the study. Unfortunately we have no access to 23 and me from Germany.
but I could send some information on some 40 genes,(i.a.MTHFR, which is it defective.)
Would that be of any help?
how can I get in contact?
Cheers
Hi Cort,
I’ve gotten my mother (who has ME/CFS) the National Geographic DNA testing kit (seems to be more comprehensive than 23&Me and Ancestry ones) can this DNA testing be accepted/used by Dr. Klimas’ study?
Thank you,
Karen
i am a 59 year old male in north dakota after 2 surgeries 6 years ago
got severe cfs and fibro am taking guaifenisen for fibro helped alot for headaches still can not hold a job i to have MTHFR mutation taking methacabalyn shots 3 times a week helps some for ears ringing and some energy terrible exhaustion been to 50 doctors did stem cell infusion in my spinal fluid for headaches did help but still exhausted hard time standing doctors don’t know why comes and goes with fatigue no reason dull headaches blurred vision have to sit a lot every day and still exhaust out hope cortene or boston for fibro went to mayo clinic no answers hope something helps soon
I did the Klimas study last week. I tried a couple years ago when it first started but it was having glitches at the time and I managed to get locked out. It went very smoothly this time, no issues. I used my desktop computer as the Ipad is not as friendly to do the study.
It would be lovely if there is follow up. I am also willing to participate if they ask for anything else. I am fortunate that so far in Canada there are no repercussions for doing genetic testing…so far. Perhaps I am naive but if doing genetic testing can help all illness it would be good for all.
Eric, I understand your concern that the Truckee High School would become implausible, as well as other outbreaks such as the Royal Free Hospital, etc. But perhaps we find some sort of susceptibilities that will help us find a link. I know there is much more research needed and this is just a step forward. We are fortunate that we could be added to the Gulph War group.
As for costs for Canadians the test is expensive. I asked for it for my Christmas so everyone chipped in. Just like I ask for donations during the triple giving time period as my Christmas gift towards Ron Davis work. https://www.omf.ngo/triple-tuesday-18/
I have many family members with ME/CFIDS/Fibromyalgia/Endometriosis/Crohns/movement disorders and on and on. Somewhere our genes took a beating.
Sounds like lots of new research, it gives me hope.
Thanks Cort for the update.
is Nancy Klimas’s genetic data base study still excepting raw data. I’ve tried contacting them by email a couple of times with no reply.