Formal Appeal to the CDC to Revise Incorrect Data Published on Lyme Disease

Bruce Alan Fries, President of the Patient Centered Care Advocacy Group, along with Holly Ahern and Chris Fisk from the Lyme Action Network, have issued an official “Information Quality Request for Correction” complaint to the Centers for Disease Control and Prevention (CDC).

This complaint urges the CDC to make timely revisions to inaccurate data published across various CDC materials on Lyme disease. You can read the full complaint here.

Needed Changes

This complaint stemmed from one singular sentence included in presentation materials, publications, and web pages from the CDC stating that the erythema migrans (EM) rash associated with Lyme disease occurs in 70-80% of all patients. This rash often has the presentation of a bull’s eye.

Due to the CDC’s authority in this field, this one singular sentence has had tremendous impacts on the diagnosis, care, and research of Lyme disease. In other words, its inaccuracy is impeding patient outcomes.

The Investigation

This statement came from a study called “Epidemiologic Features of Lyme disease in New York” published in 1984. It asked physicians to report Lyme disease patients based on one sole criteria- the EM rash. This is ultimately an example of confirmation bias as it failed to include any other symptom of the condition.

Before this study was completed, EM incidence in Lyme disease was estimated to be less than 50%. Following the study, the 70-80% statistic became widely accepted, despite the study’s flaws. While this type of study itself has never been replicated, other recent evaluations have found a much different number.

In a primate study, EM prevalence was found to be just 10%. A human study indicated a rate of 9% of the bull’s eye like rash and a 50% rate of any EM rash at all.

The Issue

Ultimately, this inaccurate data has caused researchers to incorrectly utilize the EM rash as both an endpoint and an entry criteria in studies of Lyme disease. It has caused medical professionals to misdiagnose patients, delay their treatment, or deny patients treatment all together because they do not have a rash. This results in an increase in chronic Lyme disease cases, as research has indicated delayed treatment often results in treatment failure. This, of course, is impacting patient’s quality of life.

Change is clearly needed.

Recommended Actions

The authors of this complaint have asked the CDC to take two actions. First, they ask that they revise the published data in all of their materials to utilize the statistics from the aforementioned, unbiased study which noted EM bull’s eye prevalence at 9% and the prevalence of any rash at 50%. Within these edits, they urge the CDC to include a statement which says that the presence or absence of a rash should not solely determine a Lyme diagnosis. Second, they ask the CDC to conduct a full systemic review of their published Lyme disease data and follow this review with a notice in their Morbidity and Mortality Weekly Report stating the actual prevalence of EM rashes.

You can read more about this appeal here as we all anxiously await the CDC’s response.

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