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.
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 records 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 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.