Advocacy Month 2022 focuses on connecting people with ME/CFS, Long Covid, and other related illnesses—brings together scientists, clinicians, and caregivers to educate Congress and the world
As the prevalence and significant impact of Long Covid continues to increase, the number of people suffering from the debilitating and chronic illness known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) parallels this growth. Solve M.E. and its partners will spend May advocating for people with ME/CFS, Long Covid, and other chronic diseases, to ensure that ME/CFS and other post-infection diseases are widely understood, diagnosable, and treatable.
“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,” said Oved Amitay, president and CEO, Solve M.E. “We know that learning more about Long Covid deepens 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, as well as other long-haul diseases that share their characteristics.”
Advocacy Month events are open to the public and include opportunities for every energy level and ability to join. The kickoff event on May 2 will feature Jessica Kellgren-Fozard, a leading advocate for LGBTQ+ and disability rights who has worked with MTV, BBCThree, BBC Radio 1, and ITV.
A host of other high-profile speakers at the forefront of the scientific and medical community will present, including Dr. Peter Hotez and Dr. Maria Elena Bottazzi — nominees for the 2022 Nobel Peace Prize for their work to develop and distribute a low-cost COVID-19 vaccine to people of the world without patent limitation.
Below are key dates and registration/viewing links (as appropriate):
- May 2: Advocacy Month Kickoff
- May 4: Remote Congressional Meeting Training
- May 10: US House of Representatives Congressional Meetings
- May 11: US House of Representatives Congressional Meetings
- May 12: World ME Day
- May 17: US Senate Congressional Meetings
- May 19: Long Covid — Research, Policy and Economic Impact (In-Person and Virtual Event)
- May 26: EmPOWER M.E.
Registration is required for some events. Click here for a full calendar of events and registration information.
A recently released whitepaper by the Solve Long Covid Initiative spotlights the staggering economic impact of Long Covid:
- 22 million U.S. adults are living with Long Covid (LC) – close to 7% of the population.
- 7 million are experiencing Disabling Long Covid (DLC) – 2.3% of the population.
- As of January 2022, the cumulative cost of LC is estimated at more than $386 billion. (This estimate includes lost wages, lost savings, and medical expenses incurred by individuals. It does not include costs incurred by businesses or government agencies.)
- Complete state statistics may be found here.
Before the pandemic, experts estimated up to 1 to 2.5 million cases of ME/CFS. Now, after two years of COVID-19, those same experts estimate between 5 and 9 million cases of ME/CFS. A similar explosion of cases is happening with other post-viral conditions.
“Long COVID and debilitating, chronic diseases directly impact our communities,” said Emily Taylor, Vice President of Advocacy and Engagement, Solve M.E. “It’s never been more important that we all come together to amplify our voices on Capitol Hill. We are uniting these diverse groups of patient advocates, their loved ones, scientists, clinicians, and caregivers from across the country. We are all in this together.”