Solve Me CFS Initiative

Reasearch programs - in december 2020 the organization launched the you Me registry and biobank, an open-sourced research tool it developed that is designed to help advance the research and development of diagnostics and treatments for me/cfs. The organization provided curated research updates by email to approximately 28,000 constituents and continued to expand the you Me registry creating the worlds largest longitudinal me/cfs and long covid database, with nearly 5,000 participants enrolled. The participants contributed 2.4 million datapoints, providing a robust resource for researchers searching for diagnostics and treatments. The organization also provides scientific research grants for scientists and doctors to find causes and ways to treat and cure post infection diseases like me/cfs and long covid. During 2022, the organization awarded ramsay research grants to 7 scientists at organizations in the us, australia, the uk and canada, selected through a blinded peer review process.

Advocacy and communication. The organization works with the us congress to increase funding for me/cfs research by the national institute of health nih, center for disease control cdc and the department of defense. During the year ended june 30, 2022, 325 advocates participated in 250 virtual meetings with members of congress and their staff and 2,969 messages were sent in support of our requests. In addition, the organization co-authored and published the critical whitepaper long covid impact on adult americans early indicators estimating prevalence and cost, published by the milken institute review. This report was the only paper at the time with state-based data, enabling advocates to educate members of congress about the impact of long covid and how much economic cost their state was facing. The organization also partnered with global interdependence center on a year long webinar and conference series exploring the pandemics long term healthcare, policy, and economic impact, educating hundreds of participants from various sectors of the health-care and financial fields.