Critical Appraisal of Chronic Lyme Disease Protested

October 9, 2007 -- Members of the Lyme Disease Education and Support Groups of Marylandhave joined national and international organizations in voicing concern over a recently published article in the NEJM, "A Critical Appraisal of Chronic Lyme Disease".

The article claims chronic Lyme disease is now a “misnomer” and antibiotics are not required to treat this complex infectious disease. They state the physician’s role in dealing with patients who remain sick when the author’s “cost-effective” treatment plan fails should be restricted to only providing “emotional support and management of pain, fatigue, or other symptoms”.

Lucy Barnes, director of the Lyme Disease Education and Support Groups of Maryland strongly disagrees. “Chronic Lyme disease has been described in detail in the medical literature by some of these same authors and many others for the past 27 years.

To suddenly say after 800 scientific articles have been published that chronic Lyme is simply now a “misnomer” and in turn eliminate all access to antibiotic treatment for patients whose doctors have prescribed it, jeopardizes the lives of all our residents. Furthermore, their claims cannot be substantiated by the bulk of unbiased scientific medical literature or by chronically ill patient’s clinical outcomes.”

In Maryland, more than 2/3 of the $430 million spent annually on Lyme related costs are attributed to those who are chronically ill and require treatment past the 2-4 weeks currently prescribed. In fact, up to 60% of Lyme patients have been shown to relapse months to years later when using the short term treatment protocol recommended by these same individuals.

The author’s rationale for promoting their new “no-chronic-Lyme” theory has not been officially determined; however, patients are concerned about motives since a number of the authors are facing possible charges stemming from the Attorney General’s investigation into antitrust, exclusionary conduct and illegal monopolization practices directly related to some of the authors own Lyme disease treatment guidelines (Infectious Disease Society of America).

In addition, several of the NEJM article’s creators hoping to wipe out chronic Lyme with a stroke on the keyboard and one journal article (Feder, Johnson, O’Connell, Shapiro, Steere, Wormser) have admitted conflicts of interest by having ties to the insurance industry and patents on Lyme products.

They also accepted Lyme related research grants and/or own equity in or have received funding from pharmaceutical companies. Some have been paid to testify in civil, criminal and medical malpractice cases involving Lyme disease patients and have reviewed Lyme disability claims for insurance companies.

Three of the Ad-Hoc Group authors are reported to be from Johns Hopkins Medical Institution in Maryland. One proponent of the no-chronic-Lyme theory, E. McSweegan, was demoted from his position as head of the NIH Lyme disease program after an incident involving the harassment of Lyme support group members. Two other employees from Hopkins (P. Auwaerter, JS Dumler) are listed as authors or editors on the controversial Infectious Disease Society of America’s Lyme disease treatment guidelines which are currently under investigation by government officials for possible illegal practices.

“Unfortunately, there have been major problems [other than the ticks] facing people with Lyme disease over the years,” Barnes admitted. “First of all, some of these authors claimed Lyme was a virus and needed no treatment.

They also said only deer ticks that were attached for 48 hours could transmit Lyme and nearly everyone with Lyme had a bulls-eye rash. None of that was true. Many doctors and patients were misled for years by erroneous information and many patients suffered serious consequences from their unsubstantiated theories. In addition, the Lyme tests the authors recommend and which Maryland residents pay over 2 million dollars per year for, according to the authors own research and other studies, still miss 75-90% of the people who have Lyme disease.

I know of no other medical condition for which these set of circumstances and these inadequate diagnostic tests would be acceptable or tolerated. I can’t believe these tests are still on the market and still being promoted by these authors."

"The continued use of their unreliable tests negatively affects studies they have conducted and their conclusions. Their failed vaccine, based on these same types of questionable studies and lab tests, was pulled from the market after 1,000 adverse event reports were filed with the FDA and now their diagnostic and treatment guidelines are under investigation by the government for illegal practices.

With all of the author’s incorrect theories floating around unchecked and their unwillingness to incorporate scientific or medical viewpoints other than their own into their recommendations, patients are the ones paying the ultimate price."

Barnes cautions, "At this point I would have to warn people with Lyme to consider credibility and motives when deciding if chronic Lyme disease exists and if it requires more treatment than a pat on the head and a lecture trying to convince people they aren’t really sick.

Or better yet, take a look around at the increasing number of people who are chronically ill or disabled from Lyme, as well as those who have died from tick borne diseases after being treated with their protocols. That should tell the whole story.”

Contact person: Lucy Barnes,

Director

Lyme Disease Education and Support Groups of Maryland