“I firmly believe that a global registry and biobank will be the single most impactful driver of progress in ME/CFS, deepening our understanding, helping us pick apart the heterogeneity, and driving us towards treatments.” Sadie Whittaker – SMCI
The You+M.E. Patient Registry is now a year old. It’s available to all ME/CFS and long COVID patients and healthy controls in the U.S. and Australia.
The You+M.E. Patient Registry is the biggest single infrastructure bootstrap the ME/CFS community has ever produced. Patient Registries are not easy to produce – it took Solve M.E. four years to produce theirs. Fibromyalgia – which is at least five times the size of ME/CFS – doesn’t have one. Irritable bowel syndrome has 10-20 times more people than ME/CFS – and doesn’t have one. Lyme Disease does, though. Its 2015 patient registry has more than 15,000 people in it. A major Migraine Patient Registry that combines patient data, brain scans, and other biological measures showed up in 2018.
The reason many major diseases have patient registries is that they work. Besides providing insights no other program can, they also reduce research costs, and simply by drawing researchers to them, they can dramatically increase research funding.
In her October 2019 post, “Patient Registry is the Key to Achieving Big Data For M.E.“, ME Action’s Jamie Seltzer reported that patient registries have been particularly effective research accelerators in rare or underserved diseases. Studies on Rett Syndrome, a rare neurological illness, for instance, increased tremendously in the years following the creation of the registr
Solve M.E.’s Sadie Whittaker noted cancer patient registries allowed researchers to precisely target cancers with therapies. Lyme Disease believes their Patient Registry will help end an NIH-funded treatment trial drought that’s lasted almost 20 years.
The You+M.E. Patient Registry (PR) could potentially do the same, as it provides the only source of widespread treatment information that researchers, the NIH, and drug companies are likely to listen to. Because the You+M.E. Registry is also collecting patient data, and will be collecting biospecimens, it has the potential to determine which types of patients benefit from which treatments. The point is that every data point you contribute to the PR has the potential to move this disease forward.
The Patient Registry checks some pretty big boxes for ME/CFS:
- Research accelerator
- Subset diviner
- Drug development promoter.
Patient registries are not sexy, though. While they’re potentially more valuable than any one research effort, they typically don’t generate a lot of excitement. The fact that an organization has taken the time, money, and resources to build a patient registry indicates to me that a research field has reached the level of maturity where it’s willing to engage in the hard, unglamorous work needed to be successful.
It certainly hasn’t been easy or cheap. Solve M.E. spent four years developing the You+M.E PR. It hired a full-time person to manage it, and then created a new award package (Stupski Awards) to provide grants to researchers. (They’ve funded two of them.)
Is the You+M.E Patient Registry Working?
So, why the question “Is the You+M.E. Registry working”? Its registry is clearly working. By including COVID-19 patients, expanding to other countries (Australia, the Decode ME study in the UK), creating a tracking app, funding researchers, Solve M.E. has proved to be a nimble, creative and committed registry manager. The registry itself is working just fine.
A better question might be whether we as a community have responded to the promise that the registry is. A year and a month after it opened, the registry has 5,014 participants, just over 3,000 of whom have ME/CFS.
Five thousand people is certainly a lot of people. Thus far, the 5,014 people who have provided their information to the registry have gifted the ME/CFS community with over a million data points to help researchers understand ME/CFS. A five-thousand-person study would be one of the largest, if not the largest, in terms of participants, studies ever done.
I can’t help but wonder, though, whether the possibility the registry presents for ME/CFS is even close to being fulfilled. Diseases like ME/CFS and/or long COVID probably affect millions of people in the U.S. For me, the one-year anniversary of the You+M.E. Registry has brought to the fore a decades-old nagging question – “where is everybody”?
Health Rising (HR) has pushed the registry hard. Solve M.E. has pushed it even harder. So why don’t we have 10,000, 20,000 or even 50,000 participants in the registry?
One possibility is that Solve M.E., and HR, and other groups that have publicized the registry have maxed their audiences out. Most everyone they can reach who wants to be in the registry is in the registry. It’s also possible that a considerable number of people are planning to enroll in the registry, but haven’t yet, or that a considerable number of people aren’t willing to enroll in it.
That’s where the Health Rising survey below comes in. It seeks to find out where everyone – those who enrolled in the registry and those who have not – is about the registry.