It was only a matter of time before this happened. The Solve ME/CFS Initiative’s You+M.E. Patient Registry, after all, wants to take over the world. They want every single person with ME/CFS – anywhere – to be in it. I get it. I want the same.
This thing is too important, too loaded with possibilities to stop at something like a boundary line. It’s Australia that gets the distinction of being the first You+M.E. international partner.
(A nice kind of symmetry has developed: there’s the U.S. on the upper left and Australia on the lower right – now it’s just a matter of getting everyone in between. Just a couple hundred countries to go…)
This is not to say that it’s easy to leap outside the U.S. It’s just worth it to do it. Sadie Whittaker, the Chief Scientific Officer for the Solve ME/CFS Initiative, told me that first they had to build a Australian You+M.E. cloud to store the Australian data, and then get the U.S. You+M.E. cloud to talk to it (or something like that.)
However they did that, for the first time, the 240,000 or so people with ME (myalgic encephalomyelitis) in Australia have a new opportunity. They can now power ME research – simply by signing up and answering some questionnaires. If they want to, they can also use the Patient Registry’s handy app to chart how well they are doing, and what works and doesn’t work.
The reason every major disease has a Patient Registry is that they work – plain and simple. If you want progress – you build a Patient Registry. They’re a foundational part of any comprehensive disease research program. 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 ME/CFS’s case they could also finally lead pharmaceutical companies to our door.
That possibility especially entices Solve M.E.’s Sadie Whittaker, who has been working on the Registry for four years. Big data, she said, transformed the cancer field she worked in. The large data sets from cancer patient registries allowed cancer researchers to get precise and tease all sorts of subsets, and then target them with therapies.
If any disease needs its subsets to be teased out, it’s the “wastebasket disease” par excellence.
For us to do that it’s going to require getting in-depth data from large numbers of people with ME/CFS and following them over time. There’s enormous power in numbers. So much power that the Solve ME/CFS Initiative hired a full-time researcher – Elle Seibert – to tease out its secrets.
There will be many. Just the first cut of the data should be able to answer questions like these:
- What happens over time to people with ME/CFS and/or long COVID?
- Does quality of life or functionality decline over time, or does it plateau?
- Do people with ME/CFS die earlier? (Let’s hope for a negative answer.)
- What about the typical comorbidities – FM, POTS, migraine, IBS, environmental illness, etc. – are there subsets embedded there? Is my ME/CFS with my environmental sensitivities different from yours with your migraines and gut problems?
- How does ME/CFS compare to long COVID? How do the long, long (long) ME/CFS patients compare to the long-COVID patients?
- Does the type of illness onset matter? Are people with infectious illness onset different than people with gradual onset?
- How are long COVID and people with ME/CFS doing with the coronavirus vaccinations?
So far, 2,400 ME/CFS patients and 540 long-COVID patients in the U.S. have signed up. That’s a start, but this thing really only gets cooking when tens of thousands of people have donated their data to science.
That’s some pretty hard-earned data, for sure. Sometimes some very long-term data. The Registry is the opportunity to put that hard-won data to use. Don’t worry – your data will secured, anonymized, and encrypted – it will be in good hands – with people eager to tease out this disease’s secrets.
The difference the You+M.E. Patient Registry will make will only be as big as the community support that it gets, though. The NIH has asked us to deliver for years, and now with the Registry, we have. Establishing it was the first step. Now we need to deliver. We need to give it our precious data.
If we fully participate in the Registry, it will help to produce answers that this disease vitally needs. If not, we will continue on as we are.
Can you say bye-bye wastebasket illness – hello legitimacy, drug development, more research funding? That’s what the Registry is about.
The Solve ME/CFS Initiative found a great first international partner in Emerge Australia. I first heard of Emerge a couple of years ago. Since then, their funding has dramatically increased, they’ve put on a 3-day conference, established a research group, and now created the first You+M.E. portal outside the U.S.. In other words, they’ve really emerged.
In partnership with the Open Medicine Foundation (OMF), this year Emerge created Open Medicine Foundation Australia and Melbourne ME/CFS Research Collaboration led by Chris Armstrong. As the fifth international research center in the OMF’s network, Emerge just became “part of the largest, concerted worldwide non-profit effort to diagnose, treat and find a cure for ME/CFS”.
Then in April, Emerge opened the Australian version of the Solve ME/CFS Initiative’s You+M.E. Patient Registry. Next up is producing the Mason Foundation-funded ME/CFS Biobank which will link to the You+M.E. Patient Registry Australia.
More Emerging Possibilities
Long COVID – The possibility of studying large numbers of ME/CFS and long COVID patients side by side is tantalizing, indeed. In fact, the You+M.E. Registry may be the only place where it’s possible to do that right now – making it a precious resource not only for ME/CFS but for long COVID researchers.
Not only is the Registry open to individual long COVID patients but it’s ready right now to engulf, ingest, digest – however you want to put it – large amounts of data from other long COVID tracking efforts. Find more about that here.
- Next up for the You+M.E. Registry – the UK. (UK residents can get updates here.)
- The Patient Registry is coming. Sign up to get updates here.
Whether you’re in the U.S. or Australia,
Whether you have ME/CFS or Long COVID
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