Advocacy Week is a nationwide advocacy effort to connect people with ME/CFS, Long Covid, POTS and other dysautonomias, Chronic Lyme, and other infection-associated chronic conditions and illnesses; scientists; clinicians and caregivers to share their unique stories with Congress.
Our ultimate goal is to make ME/CFS, Long Covid, and infection-associated chronic conditions and illnesses widely understood, diagnosable, and treatable.
Solve M.E. Advocacy Week 2024 will take place virtually April 15-19, 2024. Due to popular demand, we’ve extended our Advocacy Week registration deadline to March 15!
This is your chance to speak directly to your congressional representatives and tell them why they need to support research for ME/CFS, Long Covid, and other infection-associated chronic conditions and illnesses. Our goals are to educate, empower, and deliver our message: “#StopTheLongHaul now!”
Educating Congress About Infection-Associated Chronic Conditions and Illnesses
This year for advocacy week we are going to use our meetings with legislators to educate them on the emerging science and community efforts under the umbrella of infection-associated chronic conditions and illnesses.
Our Ask: To establish an Office or Center at the NIH that addresses infection-associated chronic conditions and illnesses (IACCIs). This would convene researchers across specialities, streamline resources, facilitate/require patient engagement, and improve external outreach with a plan to foster collaborative research, including through clinical trials and sites.
Solve Vice President of Advocacy and Engagement Emily Taylor noted, “This new Office or Center would be critical to avoid potentially redundant research and ensure related research is cross-pollinating among different centers at the NIH.”
Our Talking Points:
- Infection-associated chronic conditions and illnesses impact millions of Americans and can disable sufferers for life.
- These illnesses are multisystemic, and fall through the structural gaps in our medical system. They face a lack of clear treatment pathways.
- Due to their relapsing and remitting nature, IACCIs leave people in a gray area within social support networks, struggling to qualify for disability, but too sick to work.
- Like cancer, there are many different types of IACCIs, but they have many common traits.
- We are also here to advocate on behalf of those who cannot leave their homes due to severe/very severe ME – in fact, 25% of those with ME/CFS are bedbound and 75% are unable to work. On average, patients with myalgic encephalomyelitis have a lower quality of life score (QOL) and are more disabled than patients with diabetes, colon cancer, multiple sclerosis, and chronic renal failure.
- We need a coordinated solution to address this. Our recommendation is an office or center at the NIH.
Suggested Reading:
Complementing our Advocacy Week 2024 efforts, Solve has co-authored a new white paper, “A Home for Infection-Associated Chronic Conditions and Illnesses (IACCIs) at NIH.” Co-written by Solve President and CEO Emily Taylor, accomplished journalist and filmmaker Ryan Prior, and science and policy researcher Melissa Smallwood, the white paper outlines the economic burden caused by IACCIs and the lack of appropriate NIH funding to meet the needs of those who suffer. The co-authors recommend possible policy solutions to this problem, which includes the establishment of a dedicated IACCI research entity at NIH.
Advocacy Week 2024 participants are encouraged to share the white paper when meeting with legislators to educate them on the emerging science and community efforts under the umbrella of IACCIs and how a dedicated NIH funding mechanism could make a difference.
Read our white paper in its entirety here.
