Looking into the Future of ME/CFS Research with Fox Insight Parkinson’s Disease Registry

By Sadie Whittaker, Chief Scientific Officer, Solve M.E.

It’s been a year since we launched the You + ME Registry and it’s now the largest global data repository for ME/CFS—we currently have more than 4,000 participants enrolled and more than one million data points. This is an incredible accomplishment made possible by the support of the ME/CFS community. As the Registry grows, it becomes a more and more valuable resource for researchers.

In December 2020, we expanded the Registry to include data from those with Long COVID. The most prevalent Long COVID symptoms—crippling fatigue, post-exertional malaise and cognitive dysfunction—mirror those of ME/CFS and both are post-viral illnesses. Our hope is that learning more about Long COVID can deepen our understanding of ME/CFS and that what we know about ME/CFS can shed light on Long COVID—and ultimately point to treatments and cures for both.

One of the key questions we heard over the past year is “how exactly will the Registry advance ME/CFS research?” Perhaps the easiest way to explain the immense potential of the Registry is by highlighting a similar resource established for the Parkinson’s community.

Launched in 2015, Fox Insight, a Michael J. Fox Foundation for Parkinson’s Research initiative, is a registry much like You + ME in which people with Parkinson’s disease share health information to help researchers identify treatments and cures.

Their community currently stands at 48,000 strong. More than 400 researchers are registered to access the Fox Insight dataset, resulting in 12 publications. Research informed by the data led to two FDA-approved therapies and an additional 35 potential therapies are advancing through clinical trials.

The same is possible for ME/CFS.

We have some enrollment gaps we hope you can help us fill:

  • Individuals infected by COVID-19 with or without long-term effects.
  • Members of underrepresented communities: Consistent with historical enrollment of people with ME/CFS in research, the current composition Registry is largely white and does not reflect the diversity of our community. We will be making a directed effort to increase inclusivity and participation.
  • Control volunteers: About 30% of our enrollees should be controls and we’re currently at around 10%.

And, finally, some exciting news! We began to analyze our data and plan to share results in coming weeks! Thanks for all you do to make the Registry a success. None of this would be possible without you.