Solve M.E. Board Member Testifies at Congressional Hearing

House Holds Hearing on “Understanding and Addressing Long Covid” 

This week, the Select Subcommittee on the Coronavirus Crisis held a hearing on understanding and addressing Long Covid and its consequences. The panel featured perspectives from patient, public health, employment, and research experts who testified to the impacts of Long Covid, and how the federal government can help Americans manage Long Covid as the nation continues to move beyond the coronavirus crisis.

Cynthia Adinig at Subcommittee Hearing

Cynthia Adinig, Solve M.E. Board member and patient advocate, was one of the witnesses who shared powerful testimony,

“We have spent the last 2 years working tirelessly to educate ourselves, other patients, doctors, nurses, members of congress, and government agencies. To educate those who touch the lives of those in our communities on the best way to treat and care for us. To try to do our civic duty and help ameliorate unnecessary repeat trips to the Emergency room by arming those who need it with our hard earned lived knowledge and by collaborating with researchers. To warn schools, universities and parents of the impending wave of Long COVID in children.”

The hearing also featured testimony from Hannah Davis of the Patient-Led Research Collaborative, Katie Bach, who recently participated in Solve M.E.’s webinar series, and Dr. Monica Verduzco-Gutierrez, Professor and Chair of the Department of Physical Medicine and Rehabilitation.

Dr. Verduzco-Gutierrez highlighted the importance of multidisciplinary clinics that are informed by knowledge of post viral illnesses like Myalgic Encephalomyelitis (ME/CFS). Representative Raja Krishnamoorthi shared his family connection to Long Covid along with Senator Tim Kaine, who submitted a letter about how his personal experience with Long Covid inspired his work to support patients,

“I thank my colleague, Representative Don Beyer of Virginia, for introducing the COVID19 Long Haulers Act, legislation that would expand research on long COVID. Specifically, this legislation would facilitate the development of a voluntary Long Covid patient registry to collect data on the impacts of Long Covid, fund research on Long Covid treatments and disparities, and disseminate this research to health care providers, ensuring that our healers have the necessary tools to treat this crisis. I was proud to work with Representative Beyer to build upon his work in the House, and introduce the CARE for Long COVID Act in the Senate, along with my colleagues Senators Markey and Duckworth. In addition to funding research, the CARE for Long COVID Act would also support legal aid and social service assistance for long COVID patients and encourage additional federal guidance on long COVID as a disability. Adults and children with long COVID require resources to navigate workplaces and schools, including support in accessing disability benefits if needed.”

Solve M.E. sent a letter to be included into the hearing’s Congressional records.

Watch the complete hearing here.

Advocacy Cafe Chat Continues on July 29

Advocacy Cafe Chat

During Advocacy Month 2022, we premiered a new series spotlighting the voices of several standout members of our community as they inspired us with their stories, advocated for change, and answered your questions. This series — Advocacy Cafe — became a community favorite, and we’re excited to continue hosting more through the end of the year!

Join us on Friday, July 29 for the next Advocacy Cafe. Learn more here

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