People who often experience overwhelming fatigue, unrefreshing sleep, cognitive difficulties, pain, and a variety of autonomic and sensory disturbances may be suffering from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). It's a complex, long-term, chronic illness that affects multiple body systems and significantly reduces a person's ability to function. A defining feature of ME/CFS is post-exertional malaise, a worsening of symptoms after even minor physical or mental activity. In the United States, millions are estimated to live with ME/CFS, with many facing periods of being homebound or even bedbound due to the severity of their symptoms.
In response to this landscape, the Solve ME/CFS Initiative (Solve M.E.) has positioned itself as a catalyst for research and policy engagement. It also leads community-centered data efforts to advance diagnostics, treatments, and understanding of ME/CFS, Long COVID, and related post-infectious conditions.
Solve M.E. highlights the human reality of ME/CFS, where lives can change abruptly, and needs often go unrecognized. Emily Taylor, President and CEO, explains, "For many people, ME/CFS seems to arrive suddenly, and they're left trying to navigate a maze of limitations without clear direction." She adds that when an ordinary day becomes a minefield of activity that could trigger a crash, the uncertainty can be as debilitating as the symptoms themselves.
Within this environment, Solve M.E. tackles several barriers that shape the experience of people with ME/CFS. Taylor notes that medical training and acceptance are gradually evolving, and there are key opportunities to include the condition more fully in educational materials and tests. Taylor understands the urgency and makes an urgent plea for action because clinical resources vary, and the number of individuals seeking care vastly outnumbers the capacity. "Our data shows us that for every 100,000 adult patients within the United States, there is only one specialised medical professional to support them."
From Solve M.E.'s perspective, research activity has taken many directions over time, and connecting data more closely could support future progress. "I often hear patients talk about the difficulty of having their symptoms fully acknowledged. What's noteworthy is that women are four times more likely to be affected by ME/CFS and Long COVID, and that demographic context can shape how symptoms are perceived not just in clinical settings but in the broader community as well," Taylor says.
Solve M.E. also notes that the emergence of Long COVID has heightened awareness of post-infectious conditions and broadened the community of patients and researchers engaged in this work. Building on this momentum, it sees an opportunity to examine the intersections between Long COVID and ME/CFS in ways that can enrich understanding.
To translate growing awareness into tangible progress, Solve M.E. has developed a comprehensive strategy that integrates scientific research, education, and patient-centered infrastructure. Its long-term focus is research, supported by grants such as the Ramsay Research Grant Program, which attracts new scientists and supports early-career researchers through pilot studies and data analysis.
Additionally, Solve M.E. advances education and awareness by addressing medical education and clinical capacity shortages, pushing for federal investment, supporting policy change, and fostering collaboration with government partners. Initiatives such as a national medical education program for school nurses and webinars bring guidance and resources directly to the community.
The organization further supports its community through programs like Advocacy Week and EmPOWER M.E., which equip patients and caregivers to share their stories and influence policy. Finally, Solve M.E. builds on the success of the Ramsay Research Grant Program by accelerating research through their brand-new Catalyst Award program. For research on the verge of a breakthrough, this program paves the way for real impact. By funding both new and existing studies, Solve M.E aims to accelerate progress on two fronts, unlocking near-term results while also seeding the next generation of breakthroughs.
This commitment shapes how Solve M.E. engages in broader public health conversations about the risks and consequences of viral illness. Taylor states, "Allowing infections to spread without regard for long-term consequences can feel, for many, like a form of Russian roulette with people's futures." Reflecting that concern, Solve M.E. contributed to a 2022 white paper that examined the prevalence and economic impact of Long COVID, finding the cost to the US economy upwards of $51 billion annually.
Building on these efforts, Solve M.E. continues to align its scientific and educational initiatives with a central vision of reducing the burden of post-infectious disease. "Our aim is not only to find answers in the laboratory," Taylor explains, "but to ensure those answers reach the people who need them, when they need them, from bench to bedside." Through grants, alliances, data platforms, and educational programs, Solve M.E. positions itself as a catalyst within a wider movement striving for clearer diagnostics, stronger care pathways, and communities equipped with knowledge.
