The global COVID-19 pandemic has created unprecedented awareness of the long-term health effects of infection-associated chronic conditions. The number of people living with Long COVID-associated conditions or other infection-associated conditions — including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS) and other forms of dysautonomia, mast-cell activation syndrome (MCAS), persistent Lyme disease/chronic Lyme disease (PLD/CLD), and more — continue to increase.
We have previously brought together patient advocacy groups and community-based organizations working on infection-associated chronic conditions to begin discussions regarding common objectives among attending organizations and identify IACC community needs that might benefit from collaboration across organizations.
We’re pleased to announce that the first summary report, following our series of workshops on the needs and priorities of the infection-associated chronic conditions patient community, by the IACCPAC — a part of the IACCPAC Initiative, led by The Long Covid Alliance, Solve ME/CFS Initiative, COVID-19 Longhauler Advocacy Project, Dysautonomia International, and Patient-Led Research Collaborative, with support from the CDC Foundation through the Infection Initiated Chronic Conditions Understanding and Engagement (ICUE) program — is now available [access the report here].
We hope that this report helps to identify a roadmap to strengthen support for individuals experiencing IACC through strategic collaboration. For more information about the IACCPAC Initiative, or to learn how you can help address the needs of people living with infection-associated chronic conditions, email: contact@iaccpac.org.
Disclosures:
This project is supported by the Centers for Disease Control and Prevention (CDC) of the U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $77,990 with 100 percent funded by CDC/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by, CDC/HHS, or the U.S. Government.
