Protesting CDC’s biased reporting in PubMed Commons
The CDC’s June 15 article in MMWR, which slams “chronic Lyme” treatments—and by extension, Lyme patients and the doctors who treat them—continues to draw sharp responses from the Lyme disease community.
ILADS physician Raphael Stricker, MD, and his frequent co-author, LymeDisease.org CEO Lorraine Johnson, posted their rebuttal on PubMed Commons on June 17. Now, when anyone accesses the original article on PubMed, Stricker and Johnson’s reply will be shown right along with it.
The authors point out flaws in how CDC employee Christina Nelson conducted the study described in the MMWR article, and assert that her “biased report raises scientific and ethical issues about the CDC’s role in promoting the best care for patients with tickborne diseases.”
Here is the full text of their letter:
The article by Marzec et al. published in MMWR purports to show the dangers of treatment in patients diagnosed with chronic Lyme disease (1). Recent reports from the Centers for Disease Control and Prevention (CDC) indicate that more than 300,000 new cases of Lyme disease are diagnosed each year in the USA (2). The MMWR article from the CDC describes five anecdotal cases of treatment complications in these patients while ignoring the significant morbidity related to denial of treatment for chronic Lyme disease (2,3). The resultant biased report raises scientific and ethical issues about the CDC’s role in promoting the best care for patients with tickborne diseases.
The MMWR piece resulted from anecdotal reports gathered by Dr. Christina Nelson of the CDC. The article notes that the information was gathered because “clinicians and state health departments periodically contact CDC concerning patients who have acquired serious bacterial infections during treatments for chronic Lyme disease.” However, an ethics complaint filed against Dr. Nelson by the Lyme disease patient advocacy group LymeDisease.org suggests that these adverse event reports were in fact specifically solicited by Dr. Nelson via emails distributed in 2014 (4). Dr. Nelson asked clinicians from the Infectious Diseases Society of America (IDSA) to provide anecdotal evidence of harm to patients from intravenous antibiotic therapy related to Lyme disease, and she apparently offered coauthorship of her article as an incentive to describe these adverse events. She did not ask for consequences of failing to treat these patients, nor did she solicit commentary from practitioners who treat chronic Lyme disease according to the guidelines of the International Lyme and Associated Diseases Society (ILADS).
The risk of any medical treatment is extremely context-sensitive. A crucial question is whether the risks of treatment are warranted given the potential benefits, the availability of other treatment options, the severity of the patient’s presentation, and the risk tolerance of the individual patient. By asking for an assessment of treatment risks only, Dr. Nelson is framing the issue in a manner that excludes the other half of the equation in a risk/benefit assessment. She is also ignoring an issue that is critical to patients who suffer a profoundly diminished quality of life due to their illness, namely the risk of not treating (5,6). Moreover, by failing to mention that these adverse event reports were rare and specifically solicited, she implies that these rare occurrences are a common concern. In reality, studies of the risks and benefits associated with intravenous antibiotic treatment for Lyme disease indicate that the risks of adverse events are no greater than the risks of intravenous therapy in other unrelated diseases (7,8).
By asking the question only of those on one side of the controversy, Dr. Nelson is further demonstrating favoritism and a lack of impartiality on the part of the CDC. Accordingly, Dr. Nelson’s solicitation of anecdotal adverse events for case studies of Lyme disease is a highly inappropriate partisan act of favoritism toward the IDSA viewpoint at the expense of critical stakeholders – Lyme disease patients and their treating physicians – and an attack on the ILADS viewpoints.
A second PubMed Commons response to the article was posted by Dr. Sing Hang Lee, Director of Milford Molecular Diagnostics Laboratory, which specializes in developing DNA sequencing-based diagnostic tests.
Marzec and colleagues presented five “chronic Lyme disease” patients who did not benefit from additional antibiotic treatment when the diagnoses of “chronic Lyme disease” were made on the basis of clinical symptoms and signs (www.cdc.gov/lyme/diagnosistesting/) or by unvalidated tests. The authors have not presented evidence to show that chronic Lyme disease patients with borrelial spirochetemia proven by culture or by gene sequencing do not benefit from additional antibiotic treatment. In medicine, certain chronic infections, such as subacute bacterial endocarditis, may require intravenous or prolonged antibiotic treatment  in spite of its potential side effects.
Other responses to MMWR article:
Dorothy Leland, LymeDisease.org: CDC ignores ethics, attacks “chronic Lyme”
Pat Smith, Lyme Disease Association: Who Controls Fake Lyme Disease News?
David Michael Conner, Huffington Post: An Open Letter to Editors of The Washington Post About Journalistic Ethics & Integrity