As recently as 2006, the IDSA guidelines referred to the very real symptoms of chronic Lyme disease as ’the aches and pains of daily living’. Years of grassroots advocacy by ordinary people is finally paying off with the recognition that these symptoms are seriously debilitating. The US National Academies conducted a public workshop to better understand infection associated chronic diseases including persistent Lyme disease, long COVID, ME/CFS and MS.
Although there is still much work to be done, Canadians will recognize several names on the members committee including Lorraine Johnson, Brian Fallon and Amy Proal – all strong supporters of science based medicine. A collaborative approach to seeing patients get better is exactly what’s needed.
“This workshop aims to bring together clinicians, researchers, and other stakeholders to examine common biological and clinical factors associated with these chronic illnesses, discuss potential strategies to treat or prevent disease progression, and increase collaboration among stakeholders to build a community of shared priorities that can enhance patient care.”National Academies
The US CDC now states that Borrelia burgdorferi is linked to chronic symptoms and is willing to work with patient groups to understand the needs of patients who find themselves suffering from these debilitating symptoms.