Tag Archives: Lyme disease

Addressing the controversy over ‘chronic Lyme disease’

Image by Penn State via Flickr

Image by Penn State via Flickr

Covering Lyme disease can be a complicated endeavor. It’s hard to diagnose, and it’s even more difficult to decide what to call the ongoing symptoms. Janice Lynch Schuster reported on the controversy in The Washington Post, discussing both Lyme disease and its aftereffects.

According to the American Lyme Disease Foundation, Lyme disease, a bacterial infection spread by deer ticks (also known as blacklegged ticks), can cause fever, chills, and severe joint pain. However, detecting a tiny tick is a challenge, and the famous red bull’s-eye rash associated with Lyme-carrying tick bites doesn’t always occur. Many people suffer symptoms for months without a diagnosis, and those suffering the effects of Lyme disease are frequently brushed off by health care professionals, who dismiss symptoms as psychosomatic or stress-related.

As if that weren’t enough, the 300,000 people thought to be infected with Lyme disease each year may suffer chronic symptoms such as body pain or “brain fog” even after diagnosis and antibiotic treatment.  Experts at the Centers for Disease Control and Prevention (CDC) say that 10 percent to 20 percent of people who are diagnosed with the disease and complete a two- to four-week course of antibiotics will “have lingering symptoms of fatigue, pain, or joint and muscle aches,” known as “post-treatment Lyme disease syndrome.”

However, other experts are quick to dismiss the idea of post-Lyme syndrome. It’s important for journalists writing about Lyme disease to understand the disagreement in the medical community over these lingering effects.

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After 5-year FOIA fight, documents show ties between researchers, officials in Lyme wars

Documents obtained after a long FOIA battle reveal “behind-the-scenes maneuvers and long-standing connections between the scientists’ group and government officials” in the debate over whether Lyme disease can be chronic.

The debate, and the fight for the documents, are detailed by Mary Beth Pfeiffer in the Poughkeepsie (N.Y.) Journal and by documentary film maker Kris Newby on IRE’s Transparency Watch blog.

In 2007, in doing research for a film, Newby requested emails and resumes pertaining to three employees at the Center for Disease Control and Prevention. She writes that “For five years the agency strung me along with frivolous denials, mysterious delays, shifting explanations and false promises. In essence, the delays became an illegal, off-the-books FOIA denial.” Her account of how the CDC handled – or didn’t handle  her request is alarming.

Newby, whose film had been completed, provided the 3,000 pages of documents to Pfeiffer.

The documents show close connections between the government officials who set disease policy and researchers who have received government funds and written treatment guidelines. “As a result, physicians and scientists with opposing views on Lyme disease believe they have been marginalized in the debate.” This graphic provides a good overview of the connections and issues.