“It will be transformative.” Francis Collins
Neither chronic fatigue syndrome (ME/CFS) or fibromyalgia (FM) exactly feel welcome at the NIH. Funding for both diseases is pitiful, but a program has just opened up which welcomes everyone’s participation. A top Harvard neurologist has suggested that the ME/CFS community look into participating in one of most ambitious medical projects ever attempted. If you live in the United States and are over 18, you are invited.
All of Us is on tour across the U.S.
The All of Us precision medicine program, created by the NIH, is looking for one million people in the United States who are willing to have their genomes sequenced and provide their medical record,s along with blood and urine samples over the next ten years. The goal is to provide insights into how and why people come down with chronic diseases.
The All of Us precision medicine program is the latest and easily the largest of recent efforts to create GIANT biobanks that will help researchers understand diseases better. Over the next ten years, the NIH is going to spend — get this — about $1.5 billion dollars on the initiative.
It’s been in planning and testing mode for about three years. The sheer size of the project will require building new infrastructure. There aren’t, for instance, enough gene sequencing machines currently available in the U.S. to do all the sequencing All of Us is going to do. (All of Us is hoping the project will spur new, less expensive and more effective gene sequencing technologies.)
The program will ask you to give blood/urine samples, participate in surveys, and provide your digital medical information. It will do your genetic sequencing for free – and provide at least some aspects of it to you – and possibly provide tracking devices such as FitBits. (Its enticement for the blood draw is a $25 Amazon.com gift card).The program, which has just been opened to the public, is already getting about 10,000 blood samples a day.
Francis Collins believes projects like this are the only way to generate enough data to understand how our genes interact with the environment (e.g. history of infections, toxic exposures) and lifestyle (exercise, smoking, drinking, etc.) to create disease.
It’s also a way to get people with poorly studied diseases like chronic fatigue syndrome and fibromyalgia to get their medical data into a major research database for free. Because the program will also be tracking health over time, it provides the opportunity for researchers to track the disease progression and even possibly assess treatment effectiveness.
Data from the project will, of course, be anonymized and be available to ME/CFS and FM researchers who can apply to use it. All at no cost to the patients. If we get enough ME/CFS and FM patients in there, it could be a gold mine.
When I enrolled in All of Us, it took me about 45 minutes to go through the videos and questionnaires. (You can stop, log out and then start the program later.) The beginning questionnaires are very basic.
Some parts of the program are off to a rocky start. Neither the digital data upload or health tracking systems were available when I logged on. I was also asked to provide a blood sample but the system could not find a nearby blood draw location (in Las Vegas (lol)). My goal was to get established in the program. I have some nice medical data I want in that database and I’m going to be getting more in the future.
Let’s put our hard-earned data to work and get that database packed with data from ME/CFS and FM patients.
Find out more about All of Us here and enroll here.
If you need more patients, ask us in Canada, we’ll be more than happy to be a part of this.
There is definitely no shortage of Canadian patients, I’m sure.
This is wonderful news. Would like to second that idea from Agnes Tremblay!
I hope Canada (and the U.S.) is listening.
Yes definitely Agnes! I would also participate in a second!!
there is an initiative like this in Canada. No gene testing, but all medical records go to them. I spoke with one researcher and we’re hoping to have enough ME patinets that we can do a study in the future. I encouraged all Canadians with ME to apply at the time. “The purpose of such a biobank is to provide the raw material for the highest-quality population studies by offering researchers pre-diagnostic risk information in order to study a range of chronic diseases including cancer, neurodegenerative and heart diseases. ”
“The BC Generations Project is part of a massive national research initiative called the Canadian Partnership for Tomorrow Project (CPTP). There are five jurisdictions involved in this project: British Columbia, Alberta, Ontario, Quebec and Atlantic Canada. ”
http://www.bccrc.ca/dept/bc-generations-project
Nice to hear. Thanks for providing that. 🙂
I have been ill since c section surgery took 5 hrs to wake up body temperature was so low 30 still after 17 years low 34 35.
I suffer chronic fatigue pain everywhere electric shocks headaches flu ache. struggle with daily life. have full time help my mum. have sleep problem and like I’m being drugged for weeks at time..it’s nightmare have no life.
NIH just released a blood Genetic test from the work Published by Dr. Joshua Milner & Dr. Lyons the test is now avaialble at Houston. Texas lab the cost out of pocket is $169.00 multiple copies of the trytase Hene is involved in ME/CFS Fibro IBS & EDS etc here http://www.genebygene.com on the Home page once opened key in Tryptase the test should open up, you need a Doctor to do the refferal there as it is a Gentic test & the results come back in 3 to 4 weeks Try also http://www.tryptasegenebygene.com my blood will be soon sent there for testing & if you are outside of the USA it must be DNA sent only to the lab
tryptase Gene ‘typo’ above mistake in ME/CFS Fibro IBS EDS etc. * Also on Facebook key into Group on there Hereditary Trytasemia…The NIH call this now Hereditary Alpha Tryptasemia Syndrome(HATS)they are trying to block the tryptase Gene also now looking at 2 Arthritis medicines to block also Interleukin 6 I heard…Clinical trial in about 2 years now doing Mouse Model studies on these medicines…They are also trying to see if they can link this or not to Mast Cell Activation Syndrome(MCAS) but nt proven yet if it is connected or not I doubt very much it is at all it is only a theory now being put out (MCAS)drugs do not work at all…
Is there any similar research being done in Scotland, come on the Scottish Parliament please do the same and show the way in caring for your people.
One potential problem I see with this is that severe ME/CFS patients, like me, have difficulty getting out of the house for lab work. Too bad.
Yes, indeed…However you may still be able to do the tracking. Imagine that database getting activity information on severely or even moderately ill ME/CFS. That could wake some people up
me too. I’m actually beginning to not recover fully from crashes after going to doctor appointments. It’s the only time I leave my apartment and truly walk..only because no one will push my wheelchair. Everyone resents my “giving in” to symptoms and not fighting through it.. like they do with arthritis.
people just do not believe ME-CFS is real. I don’t know what good my bloodwork would do.. everything’s “normal”.. remember? It’s all in my head.
The money for the blood drWs, and submitting medical records.. I can barely breath I’m so sick.. finances aren’t so good as a result.
I really don’t understand how this is truly free?
I am with you. We have been let down by NIH and CDC from day one. Ignored. Everything is normal. Get psycho therapy. I am house bound and mostly bed ridden. I live for the minute and have no concept of the next. Unable to attend Grandson’s graduation. I cannot afford genome testing and I feel I have a lot to offer, especially at my age. CDC and NIH need to kick in for any expenses after they ignored us for so long. They owe us. Right now with no remission from last severe crash, I cannot travel. I have no doctor appts because I am so normal. Too sick for appts. even if I had any. Can’t even make it to the dentist! So sick of trying to explain this to family. I just want to be alone.
Just wrote a letter to the editor at a local newspaper about M.E., CFS, Fibro awareness, & attached the link to All Of Us & your article. This is how change happens. Thank you!
Yes! This is how change happens – spreading the word – enrolling new allies. Who knows who might pop up? One article in a Stanford alumni mag lead Robert Phair to Ron Davis – and a new hypothesis for ME/CFS.
i agree with my fellow Canadians.
We will gladly participate, if given the opportunity.
Is this a one time only or will it be ongoing?
I think it will be ongoing until they fill the 1,000,000 slots
If only the UK could do something like this. Does anyone know of a good specialist in UK who really shows interest in Fibromyalgia and doesn’t fob you off with antidepressants? Most doctors look at you blankly and have know knowledge of what you are talking about. This is a really hard country to have Fibromyalgia in!
I just signed up for the program. It’s not a strenuous sign up process for those who have cognitive difficulties and are easily exhausted from reading or staring at a screen. Also – it looks like they’ve added many partner institutions to gather your height, weight, blood samples, etc., if you agree to do this. I do not live in a large city, but was given a handful of choices within a 30 minute radius.
I wonder if those of us who have paid out-of-pocket costs for whole genome sequencing could be reimbursed since it is of interest to the project…
Cort – thank you for bringing this to our attention!
I’m sure that the LV problem was a blip. I informed them about that.
Glad to hear that you signed up. 🙂
Cort, thanks for posting this. I signed up this afternoon. One thing was a little hazy to me. In your article, you said, “It will do your genetic sequencing for free – and provide it to you”, but I didn’t see anything in the sign-up info that said everyone who enrolls will have gene sequencing done. I understood the study description to mean that gene sequencing *might* be done for those that are asked to provide blood and other samples. And it wasn’t clear that everyone who signed up would be asked for blood or other samples. Perhaps it’s because they don’t have the capacity to do it for everyone now, so they’re being cautious about making blanket promises? I’ll participate anyway, but I admit that getting my gene sequencing done was a big draw for me, and I wonder how many enrollees will actually have that done.
Yes, I was unclear about that too. I put that in after reading Collins comments in a article I can’t find right now – about how to inform patients of their genome findings.
I just came across this which suggests that not everyone will get their full genome sequenced.
https://www.washingtonpost.com/news/powerpost/paloma/the-health-202/2018/01/16/the-health-202-nih-wants-1-million-americans-to-contribute-to-new-pool-of-gene-data/5a5ba45a30fb0469e8840135/?utm_term=.cadef6a16f05
Once an individual’s data has been stored at the biobank at the Mayo Clinic in Rochester, Minn., he or she could request to have their complete DNA sequenced. Or they could could get a pared-down analysis called SNP genotyping, showing only the key places in their genetic code associated with health risks or benefits.
In the perfect world, every participant would get a full genome sequencing — and that might eventually be possible as the costs of such a procedure have been coming down rapidly. But a full sequence still comes with a price tag of about $800, compared to just $30 for partial genotyping, probably making it too expensive a goal for NIH at the moment.
They are hoping, however, that the cost of full genome sampling will go down substantially over time. In fact they’re hoping that this project will provide the impetus for that to happen. But it’s clear not sure and I will amend the blog.
“showing only the key places in their genetic code associated with health risks or benefits.”
Do they actually kknow the key places for anto-immune disorders especially CFS? Can they rule anything out at this time?
I signed up last week and received a reply there are no collection sites in my area. Seriously? I live 1 hr from Seattle and about 3 from Portland. Get KP involved. They need something useful to do.
Wow. Same as in Vegas….I don’t think they know THE key places for autoimmunity – I think they do know some risk factors and hopefully this project will pinpoint more.
Cort, are there age requirements since it goes for ten years?
Only that to enter the study you have to over 18 years of age.
Thank you so much for this article Cort. You inspired me to sign up and I filled out the initial forms today- I urge everybody who can do the work of the questionnaires on line to do so. You don’t have to go in for a blood test to still be counted. If they won’t spend the money necessary to do even a small amount of research, by joining this study we can make them look at us.
Well said – they will have to look at us…:)
Would like to be in the Fibro screening and all testing including DNA. More info please. Where to go for blood draw? Do they send it or do I?
Once you enter the program you should be given some sites to go to.
Hello,
When do you think a similar project will start in Canada or at least will be open to Canadian patients?
Thank you,
Anna
Yes, if only the UK could follow this initiative.This is brilliant to see something happening. I have been ill for over twenty years and nothing at all has changed and if anything there are less specialists with an interest, in fact I know of none. So hoping something comes out of this.
Same here Co ft, as soon as I heard I joined up, signed release of my medical records.found out there was no place in RI to get blood drawn and measurements? I have no vehicle or family support to take me out of state. Very discouraging.
It’s really weird! I can’t imagine that some place won’t open up over time. I am going to do another blog on this and try and find out what’s going on.
I signed up all of us program. I sent in all my medical information. I said that all the surveys. to only find out that they don’t have a place to test in my state – for blood and body measurements. I find this so depressing. So close yet so far. I don’t have the energy a vehicle or are you going to give me a ride to the next state for tests. instead of some companies offering Amazon cards maybe we could offer travel vouchers? sick as I am I would make it there. They already have all my medical data and I think they should have a lot of people that are really sick to have to be able to have blood tests at home alternative to go to a local lab, if they can’t provide one and our own state. otherwise I think it’s a wonderful program. I’m just sad they didn’t share this blood draw area location information before , I sent them all my information, and got my hopes up and then crashed once again. still sick in Rhode Island.