Feder Reports No Persistent or Chronic Lyme Disease (or Tick Related Infections)?
Is This Book and Journal Burning?
Is This Limited Clinical Experience with Chronic Patients?
Are Patients Going to Other's Who Listen to Their Persistent Illness Reports?
Lyme Expert Defends North Carolina Infection Expert, Blasts AP for Many Errors and Takes On Drs. Shapiro and Mead
To the Associated Press,
The story entitled "Doctor Disciplined over Lyme Disease Treatment" (4/14/06) has numerous inaccuracies. First, the title makes it sound like Dr. Jemsek has already been convicted of some crime. Nothing could be further from the truth, as the story finally acknowledges in the fourth paragraph. By then the casual reader has been totally misled.
The story quotes Dr. Paul Mead of the Centers for Disease Control and Prevention (CDC), who makes comments about the treatment of chronic Lyme disease. Dr. Mead is a research epidemiologist at the CDC. He is not involved in direct patient care, and he has no expertise in the clinical management of patients with chronic Lyme disease. His comments are irrelevant to the thousands of patients suffering from chronic Lyme disease, and his uninformed clinical views are irrelevant to Dr. Jemsek's case.
The story also quotes Dr. Eugene Shapiro, a pediatric researcher from Yale University who helped formulate the now-obsolete Lyme guidelines of the Infectious Diseases Society of America. Dr, Shapiro makes another one of his nihilistic comments for which he is notorious:
"It's not that the people diagnosed with chronic Lyme disease don't have problems," he said. "It's that chronic Lyme disease is not the problem."
Over the past decade, it has become obvious that a major problem for people with chronic Lyme disease is Dr. Shapiro himself, who has used his stature as a university professor to spread misinformation about Lyme disease around the country. Sadly there are gullible reporters who blindly print his dismissive statements while ignoring the immense problems with chronic Lyme disease, which confers disability similar to congestive heart failure. Dr. Jemsek is trying to solve those problems. Dr. Shapiro is making them worse.
A story like this one should have included comments from more enlightened physician groups such as the International Lyme and Associated Diseases Society (ILADS, www.ilads.org) and from patient advocacy groups such as the national Lyme Disease Association (LDA, www.lymediseaseassociation.org). Let's hope that the Associated Press does a better job next time.
Raphael Stricker, MD
PO Box 341461
Bethesda, MD 20827
Response Statement by International Lyme and Associated Diseases Society (ILADS)
ILADS Members Question Motives of New England Journal of Medicine Article on Lyme Disease Treatment
Article in New England Journal of Medicine Fails to Disclose Conflicts of Interest of Overlapping Panel Members
Bethesda, MD Oct. 3, 2007 — Members of the International Lyme and Associated Diseases Society (ILADS) voiced skepticism regarding the conclusions of a newly published article in The New England Journal of Medicine entitled "A Critical Appraisal of Chronic Lyme Disease".
The article, written by a committee of researchers, erroneously concludes that chronic Lyme disease is a "misnomer", citing lack of scientific evidence proving the existence of the condition. ILADS members pointed out the article does not reflect real-world patient experience with the disease.
"We have great respect for the New England Journal of Medicine," states Dr. Raphael Stricker, President of ILADS. "But we are concerned this article will continue to foster inadequate care for patients who are suffering from the long term affects of chronic Lyme disease."
ILADS members believe the article's conclusions ignore more than 19,000 scientific studies on tick-borne diseases and reflect a huge conflict of interest. Specifically:
- The article was written by a group of researchers who have consistently voiced a narrow viewpoint on the existence of chronic Lyme disease and appropriate treatment. Eleven of the authors were members of the panel that formulated the 2006 Infectious Diseases Society of America (IDSA) Lyme guidelines. The panel is currently under investigation by the Connecticut Attorney General for exclusionary practices in formulating the IDSA guidelines.
- The authors of the article failed to disclose that they are under investigation by the Connecticut Attorney General. This omission violates the "full disclosure" policy of the journal and creates a conflict of interest by calling into question the authors' motives for writing the article.
- Several authors of the current article also participated in formulation of copycat Lyme guidelines for the American Academy of Neurology. Those guidelines were presented as "independent corroboration" of the IDSA Lyme guidelines, when in fact the same individuals were involved with both guidelines and employed the same exclusionary tactics that prompted the Connecticut Attorney General's investigation.
"It is unfortunate that this article perpetuates the narrow viewpoint on Lyme disease," added Stricker. "We believe it is in everyone's best interest to broaden the scope of the discussion within the medical community in order to better address the suffering among patients."
ILADS is a nonprofit, international, multidisciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of tick-borne diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.
For more information contact Pam Kahl. firstname.lastname@example.org 503.284.1534