“Chronic Lyme disease” is not a medical diagnosis.
— American Academy of Pediatrics (Know myths, facts about Lyme disease)
People who believe they have fake diseases are victims in a way other patients never can be. Not only are they suffering, not only do people not believe them, but those that do believe them do them the worst disservice—they feed their false beliefs, distract from real treatments, and offer to sell them false compassion. These quacks should be ashamed. But of course, they have no shame.
— Dr. Peter Lipson, MD (Fake diseases, false compassion)
I became obsessed with my identity as a chronic Lyme patient. I joined support groups and loudly advocated for Lyme awareness. I spread myths about chronic Lyme disease. It became my entire identity.
— Sam, who was unnecessarily pumped full of drugs as a teenager to treat a false diagnosis.
I’m a reformed Lyme Warrior. Now it feels embarrassing to say. I’m not a warrior, just a person. To some degree I feel like the warrior or spoonie stuff is part of a coping mechanism, particularly for people that took a long time to get diagnosed and lost a lot of their sense of self along the way.
— “Sarah” (Former Lyme Warrior: I’m embarrassed)
Yes, chronic Lyme is a cult. People are flocking to misguided beliefs based on what they hear from people of “power”. May not be famous people but those who have created a name for themselves through blogs, continual FB live posts, social media presence…etc.
It is a cult and it’s dangerous. It’s a frightening notion that the more information we are privy to, the dumber we are starting to become because it’s easier to just follow the words of someone who sounds intelligent than it is to actually break it down and learn for one’s self.
— Jennifer, an MS patient who wants people to stop telling her she has chronic Lyme disease.
It becomes your whole world. I mean everything I did with my life and day I saw through Lyme-tinted glasses. […] Most of the things I was taught by the chronic Lyme community and by online groups later turned out to be false.
— Nick, a patient misdiagnosed with chronic Lyme disease and three other infections. (Nick’s story)
The relations and actions of some activists, medical practitioners, and commercial bodies involved in Lyme disease advocacy pose a threat to public health.
— Paul Auwaerter, MD, Johan Bakken, MD, PhD, Raymond Dattwyler, MD, J. Stephen Dumler, MD, John Halperin, MD, Edward McSweegan, PhD, Robert Nadelman, MD, Susan O’Connell, microbiologist, Eugene Shapiro, MD, Sunil Sood, MD, Allen Steere, MD, Arthur Weinstein, MD, and Gary Wormser, MD (Antiscience and ethical concerns associated with advocacy of Lyme disease)
Many people suffering from medically unexplained chronic conditions such as chronic fatigue syndrome and other illnesses are desperate for an explanation and possible cure for their illnesses. They provide a ready customer base for any treatment that holds out promise of a cure, however lacking in evidence. The widespread use of the unreliable ILADS clinical guidelines in this large group of patients would result in inappropriate treatment and potentially serious morbidity.
Health Protection Agency of the UK (2010 review of guidelines from ILADS)
To date, no study in the United States has shown that Bartonella can be transmitted to humans by ticks. […] Unfortunately there is a great deal of misinformation regarding multiple tickborne infections (called coinfections) on the internet.
The possibility of having several tickborne infections at once or having pathogens such as Bartonella that have not been shown to be tickborne, is extremely unlikely.
‘Chronic Lyme’ may be similar to parasitosis, a delusion of persistent and intractable infection; online forums devoted to the subject show the burden of illness, fear, and risk that these patients experience. Many are extremely knowledgeable about highly technical aspects of Lyme disease and different serological approaches; they reject a single fact, their negative diagnosis and the nonpersistence of infection following treatment.
Others with a variety of symptoms are ill-equipped to resolve the conflict between different authorities: the mainstream medical and scientific establishment, the alternative mainstream of LLMDs and commercial labs, and the online community of ‘chronic Lyme’ activists.
— National Collaborating Centre for Infectious Diseases (Canada) (Lyme Disease in Canada: An Update on Case Definitions and Treatments)