Individuals with Lyme disease expressed frustration and anger about what they called the scientific and medical community's lack of seriousness and compassion about their illness, and delivered a wish list of prevention, treatment, and research priorities to a new federal committee charged with taking on the government's response to tick-borne disease.
The US Department of Health and Human Services' (HHS)
Tick-Borne Disease Working Group heard from a variety of clinicians, public health officials, and patients over the 2 days of its inaugural meeting in Washington today and yesterday. But it was the patients who made the biggest statement.
Rachel Nevitt compared those who deny the existence of chronic Lyme to Harvey Weinstein and others recently accused of sexual harassment, saying that they blame the victims, and "constantly discredit and delegitimize the Lyme specialists." She said that Centers for Disease Control and Prevention (CDC) officials and others in the medical establishment have tried to convince patients that "Lyme practitioners are quacks who have gone rogue off the guidelines and will endanger their patients with their treacherous protocols."
The advisory panel was created by the 21st Century Cures Act,
at the urging of Senators Richard Blumenthal (D-CT) and Kirsten Gillibrand (D-NY), who say tick-borne diseases are a public health threat.
