Patient-Led Research Collaborative
Supports Maine’s LD1688
April 24, 2025
Media contact: team@patientledresearch.com
On Wednesday, April 30, Maine’s Joint Health Coverage, Insurance and Financial Services
Committee will hear testimony regarding LD1688, An Act to Encourage Education Relating to
Certain Infection-Associated Chronic Conditions for Physicians and Nurses.
As the first to research Long COVID, and as a leading patient-led research and advocacy
organization, we support this groundbreaking bill, recognizing the role it will play as a pivotal
moment of change in improving the health and well-being of those suffering from
Infection-Associated Chronic Conditions (IACCs) in Maine.
IACCs are long-term chronic conditions triggered by infections and impacting approximately 31
million Americans. They include conditions like myalgic encephalomyelitis (sometimes called
“chronic fatigue syndrome”), postural orthostatic tachycardia syndrome (or POTS),
dysautonomia, Long COVID, and chronic Lyme disease, a condition that up to 20 percent of
people treated for Lyme can experience.
At least 1 in 19 American adults are currently living with Long COVID, similar to rates of
diabetes. An estimated 272,000+ Mainers are already living with this condition, with many
additional cases likely going undiagnosed or misdiagnosed. Maine’s LD1688 promises not only
to address these undiagnosed and misdiagnosed cases, but also improve services by bringing
greater awareness of Long COVID and other IACCs and available treatments to the state.
Only 7 percent of physicians report feeling very confident diagnosing Long COVID and only 4
percent say they are confident treating it. LD1688 will go a long way toward empowering
Maine’s medical providers to effectively treat the state’s most chronically ill patients. We
applaud Representative Ambureen Rana’s efforts in sponsoring LD1688 and heartily support this
crucial legislation.
About PLRC:
Patient-Led Research Collaborative (PLRC) strengthens and facilitates research into Long COVID and
advocates for policies that improve the quality of life for Long COVID patients. We conduct our own
patient-led research; partner with health and research organizations globally to improve study design, guidelines, and education for medical providers and the general public; and advocate for better treatment, care, and support for all patients. We ground our work in the principles of disability justice and participatory research methods, and in the knowledge that those who experience an illness are best able to identify research questions and solutions. Follow us on X and Instagram or reach out to team@patientledresearch.com.
Past Press Releases
June 2024 | Patient-Generated Hypotheses Journal Issue 2
April 2024 | Patient Groups Praise Senator Sanders’ Legislative Proposal for a Long Covid Moonshot
December 2023 | Urgent Call to Address Long COVID Crisis in FY25 Budget: Letter to President Biden