At Open Medicine Foundation (OMF), getting people better is at the heart of everything we do. It drives our research partnerships, our scientific standards, and our unwavering commitment to the millions of people living with ME/CFS, Long COVID, and related diseases.
Today, we are excited to share a significant step forward: the launch of CTN Lite, a new initiative that will bring us closer than ever to delivering real treatment options for ME/CFS—faster, smarter, and with patients at the center of every decision. We call it CTN Lite not because it is a lesser version of anything, but because it strips away barriers that have historically slowed trials down, leaving only the science and the patients.
A Smarter Way to Run Clinical Trials
At the heart of CTN Lite is a decentralized approach to clinical research. Traditional studies require patients to travel to a single research clinic or site—a significant barrier for anyone living with ME/CFS, particularly those who are housebound or bedbound. CTN Lite changes that. By using multiple research sites alongside virtual and remote participation options, our decentralized model will offer three powerful advantages:- Greater Speed. Decentralized trials move faster than traditional models, reducing the time between scientific insight and patient benefit.
- Broader Access. Patients with severe ME/CFS—including those who cannot leave their beds—can participate fully in studies that were previously out of reach.
- Stronger Value. This approach is typically more cost-effective, allowing every research dollar to go further and fund more trials over time.
Precision Medicine: Targeting What Matters Most
CTN Lite is not just about running trials faster—it is about running the right trials. Our approach is grounded in precision medicine, which means designing studies that target the specific symptoms and biological systems most affecting patient function. Here is how we will select the treatments we study:- Repurposed Drugs with Strong Scientific Rationale. We will focus on medications already known to be safe, including both drugs that have shown early promise in ME/CFS and those that have not yet been widely explored. Repurposing existing drugs allows us to move more quickly and cost-effectively than developing entirely new compounds.
- Measurable Biological Targets. We will prioritize drugs that act on pathways we can physically measure—for example, a drug that affects a signaling pathway with products detectable in the blood. This gives us clear, trackable evidence of what is working and why. In practical terms: we want to be able to look at your blood and see whether a treatment is working and for whom. That is how we move from “this helped some patients” to “this is why, and here is who it will help most”.
- Patient Priorities Integrated at Every Step. Scientific rationale alone is not enough. We will combine advanced research insights with the lived experience of patients to ensure our studies address what matters most to the people affected. Study designs will be developed in direct collaboration with patient representatives from the very beginning.
We are planning both pilot studies and larger-scale trials, with the scope and timing of each study guided by drug selection and available funding.
We Need to Hear From You
As a first step in informing our research priorities, we are asking patients and caregivers to help shape the science directly through a survey. You live with this illness—or alongside someone who does. You understand which symptoms are most disabling, which systems feel most overlooked by research, and where the greatest gaps in treatment exist.
That knowledge is not just valuable. It is irreplaceable. To help us tap into this knowledge, we’ve been working with a few collaborators—Tess Falor and Isabel Burnett from Renegade Research and Julia Moore Vogel from Scripps Research—to develop this survey and discuss the way forward.
The survey takes less than 20 minutes to complete and will remain open until May 15. Your responses will directly inform which symptoms and biological systems we prioritize as we design our precision medicine studies under CTN Lite. This is not a checkbox exercise—this is science being shaped by the people who need it most.
Thank you for being part of this mission. Whether you are a patient, a caregiver, a donor, a researcher, or a supporter—you are why this work is possible.
Ready to accelerate the next breakthrough?
CTN Lite grows as funding grows. Every gift brings the next trial closer to launch.
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