Scientific Community Discounts Lyme Disease Patients
When patient experience is dismissed, gaps in care widen—especially in complex illnesses like Lyme disease.
The authors of a review dismiss concerns about chronic manifestations of Lyme disease, stating, “The infection annual incidence is modest (< 30,000 cases) and is not supposed to be fatal.” [2]
Such conclusions risk minimizing the lived experience of patients who remain ill despite treatment.
Evidence-Based vs. Eminence-Based Medicine
Peretti-Watel and colleagues did not fully reflect an evidence-based medicine (EBM) approach, which integrates clinical expertise, patient values, and the best available evidence.
Instead, their perspective aligns more closely with an eminence-based model—one that relies heavily on established authority rather than evolving clinical evidence.
“In the United States the controversy mainly opposes a learned society known as the Infectious Diseases Society of America (IDSA) to a physicians’ association known as the International Lyme and Associated Diseases Society (ILADS),” the authors write.
Dismissing Chronic Lyme Concerns
The review frames chronic Lyme disease as a controversy rather than a legitimate clinical concern.
This distinction matters.
Patients with persistent symptoms often struggle to access care when their condition is dismissed or minimized.
Learn more about persistent Lyme symptoms and PTLDS and how they affect patient outcomes.
The Patient Impact
The authors express concern about public interference with expert opinion. Yet it is patients who live with the consequences of diagnostic uncertainty and limited treatment options.
When patient experience is discounted, trust in the medical system erodes.
Clinical care improves when patient concerns are heard, investigated, and addressed—not dismissed.
Clinical Perspective
In my experience, Lyme disease requires an individualized approach.
Patients with persistent symptoms should not be excluded from consideration simply because they do not meet strict diagnostic criteria.
The conversation will continue until patient outcomes improve and clinical uncertainty is addressed with better research and more inclusive care models.
Related Articles:
Recommendations dismiss seriousness of Lyme disease in children
Don’t dismiss the poor quality of life for people with Lyme disease
New study by guidelines author dismisses risk of chronic Lyme disease
References:
- Cameron DJ, Johnson LB, Maloney EL. Evidence assessments and guideline recommendations in Lyme disease. Expert Rev Anti Infect Ther. 2014.
- Peretti-Watel P, Ward J, Lutaud R, Seror V. Lyme disease: Insight from social sciences. Med Mal Infect. 2019.
- Pincus T, Tugwell P. Evidence-based vs. eminence-based medicine. J Rheumatol. 2007.
Dr. Daniel Cameron, MD, MPH
Lyme disease clinician with over 30 years of experience and past president of ILADS.
Symptoms • Testing • Coinfections • Recovery • Pediatric • Prevention
It’s a common attitude in the “scientific community”, that…”I’m the expert, I should know”. As a Lyme patient my daughter is painfully aware of it. The belief that the “expert” is always right is all that keeps many scientists, teachers, professors, and physicians on their pedestals even though they may have little or no direct experience with a specific issue. Chronic Lyme is a complex issue, as anyone connected to it knows. All we can do is keep pushing for better care and spreading the word. I try to use research based information and references whenever possible. It’s too easy to view a patient or family member as “emotional” or even “hysterical”, otherwise.
– from Texas
I know in the USA doctors kind of follow and modern Hippocratic oath? In Australia we have this code of conduct I am sure something in here means doctors have to respect patients and listen and also stay up to date with current information. Are they not failing at that?
https://www.medicalboard.gov.au/Codes-Guidelines-Policies/Code-of-conduct.aspx
I have been sick for over 3 years and cannot get a doctor to listen to me. HELP!!!
Keep looking for an answer.