2011 Race is On!
Preparing for the Release of One or More Vaccines
After countless articles in major newspapers discredited Lyme patients, volunteer advocates and their doctors- or anyone who believes in "chronic Lyme disease"- the cat has been let out of the bag.
The first "cash cow" vaccine was exposed for the harm it was causing by volunteer patient advocates Lyme disease organizations. Knowing this was one reason for the failure of the vaccine to bring in the dough, those collecting research dollars and having financial interests in the final product have worked with one goal in mind- to make another vaccine and discredit any nay-sayers before the new vaccine was ready to hit the market.
Here we go again- Lyme Vaccine- Part 2.
The articles below are similar to a letter written by an NIH employee who was tossed out of the Lyme disease program, sued, and suspended for conduct unbecoming for harassing members of a Lyme disease organization.
Clin Infect Dis. 2011 Feb;52 Suppl 3:s271-5.
PMID: 21217175 [PubMed - in process]Free Article
Livey I, O'Rourke M, Traweger A, Savidis-Dacho H, Crowe BA, Barrett PN, Yang X, Dunn JJ, Luft BJ.
Clin Infect Dis. 2011 Feb;52 Suppl 3:s266-70.
PMID: 21217174 [PubMed - in process]Free Article
Steere AC, Drouin EE, Glickstein LJ.
Clin Infect Dis. 2011 Feb;52 Suppl 3:s259-65.
PMID: 21217173 [PubMed - in process]Free Article
Clin Infect Dis. 2011 Feb;52 Suppl 3:s253-8.
PMID: 21217172 [PubMed - in process]Free Article
Shen AK, Mead PS, Beard CB.
Clin Infect Dis. 2011 Feb;52 Suppl 3:s247-52.
PMID: 21217171 [PubMed - in process]Free Article
Crofton, MD USA
Address correspondence to: Edward McSweegan, Ph.D., 1692 Barrister Ct., Crofton, MD 21114, USA. (Email: firstname.lastname@example.org)
To the Editor:
Nigrovic and Thompson  provide an instructive summary of the rise and fall of the Lyme vaccine (LYMErix™). The history of LYMErix™ continues to offer important lessons about the interactions of science and society, and how the archival and tautological power of the internet complicates those interactions. Two important points about the ongoing LYMErix™ controversy should be highlighted.
First, many Lyme disease patients and activists initially supported the idea of a vaccine against Borrelia burgdorferi. They lobbied Congress for more research, and persuaded U.S. Senators to urge the Food and Drug Administration (FDA) Commissioner ‘to hasten the agency's review of vaccine applications’ for Lyme disease . Yet, the quick approval of LYMErix™ generated not satisfaction among activists, but hostility.
A number of people who are familiar with Lyme advocacy groups or have followed the internet discussions about Lyme disease during the last decade suspect the hostility to LYMErix™ had less to do with questions about its safety and efficacy and more to do with a general distrust of academic and government scientists , and the potential loss of influence and funding among many activists.
Activists and self-described ‘Lyme victims’ had devoted years of effort to raising an obscure tick-borne nuisance in Old Lyme, Connecticut to a national reportable disease that attracted tens of millions of federal research dollars each year. They were courted by the press and had easy access to Congress and state house representatives. Many activists started tax-exempt foundations, held fee-based conferences, and set up websites to sell products and attract sponsors. Some even collected donations from vaccine manufacturers . These political and financial gains occurred even as infectious disease experts were refuting the activists' portrayal of Lyme disease as a menacing national plague.
The licensure of LYMErix™ confronted Lyme advocacy with the added problem of how to sustain public anxiety (and donations), media attention, and political clout against the evidence-based reality of a bacterial infection that was antibiotic-responsive, non-fatal, non-communicable, geographically focused, and – now – preventable through vaccination.
The vaccine's imperfect efficacy, projected cost, and potential booster requirements were the immediate targets of activists' attacks. Ad hominem attacks on individuals involved in the vaccine trials quickly followed; stoked by a simmering animosity between many patient activists and clinicians over the appropriate diagnosis and treatment of Lyme disease [5,6]. These personal attacks – and anecdotal horror stories about Lyme disease in general and the vaccine in particular – took place on the internet.
This is the second important point about the successful assault on LYMErix™. By the late 1990s, most people were gathering information about vaccines and other medical questions from the internet and not from traditional media outlets as suggested by the authors .
Unfortunately, what people found online were activist websites filled with misleading information about the vaccine, personal ‘vaccine victims’ stories, and newsgroup bulletin boards offering a repetitive stream of misinformation, libel and quack treatments [7,8]. Aside from an occasional press release, journal article or FDA hearing, no effort was made by public health officials, researchers or vaccine manufacturers to counter the online denouncements of LYMErix™ and its supporters.
The public opinion battles over LYMErix™ were fought, and lost, in cyberspace. The battle over the next generation of Lyme vaccines is already underway . Vaccine manufacturers and researchers need to develop communication strategies that will provide the wired public with accurate and compelling information about new vaccines and the public health benefits of immunization. It will be an expensive and complicated task, but so is the development and testing of a vaccine that no one will use.
Declaration of Interest
Edward McSweegan was the program officer for Lyme disease research at the National Institute of Allergy and Infectious Diseases at the National Institutes of Health during the early 1990s.
- Nigrovic LE, Thompson KM. The Lyme vaccine: a cautionary tale. Epidemiology and Infection. 2006 . Published online 8 August 2006. doi:
- Robinson MB. Associated Press; 1997. . Senators urge haste on Lyme vaccines. , 7 December .
- Feder HM. Differences are voiced by two Lyme camps at a Connecticut public hearing on insurance coverage of Lyme disease. Pediatrics. 2000;105:855–857.[PubMed]
- United States of America Food and Drug Administrationhttp://www.fda.gov/ohrms/dockets/ac/01/transcripts/3680t2.rtf. . Vaccines and Related Biological Products Advisory Committee Meeting. 31 January 2001 ( ). Accessed 23 August 2006.
- Oversight Hearing. Lyme Disease: A Diagnostic and Treatment Dilemma. U.S. Senate Committee on Labor and Human Resources; . 5 August 1993 (
- Grann D. . Stalking Dr. Steere Over Lyme Disease. New York Times Magazine, 17 June 2001 (http;//www.nytimes.com/2001/06/17/magazine/17LYMEDISEASE.html). Accessed 23 August 2006.
- Cooper JD, Feder HM. Inaccurate information about Lyme disease on the internet. Pediatric Infectious Disease Journal. 2004;23:1105–1108. [PubMed]
- Sood SK. Effective retrieval of Lyme disease information on the Web. Clinical Infectious Diseases. 2002;35:451–464. [PubMed]
- McSweegan E. Lyme vaccine demonized by advocacy groups. Nature.2006;440:278. [PubMed]
Articles from Epidemiology and Infection are provided here courtesy of
Cambridge University Press
Lyme Disease and the Politics of PublicAdvocacy
- Crofton, Maryland
TO THE EDITOR— The recent summary of negotiations between the Infectious Diseases Society of America and the Attorney General of Connecticut Richard Blumenthal suggested that the motivation for the Attorney General's actions was provided by Lyme disease advocates . Groups such as the New Jersey Lyme Disease Association and Connecticut's Time for Lyme have acknowledged their involvement , but Blumenthal's long record of legal and political activism on behalf ofpatients with Lyme disease suggests a significant degree of self-motivation.
Since at least 1999, the Attorney General has participated in Lymedisease rallies and conferences in Connecticut. In February 1999, he held a hearing on insurance coverage for long-term intravenous treatment ofLyme disease and drafted a bill to mandate such coverage . The next month, he sent a letter to the Legislature Insurance and Real Estate Committee that urged members to nullify the requirement for a second opinion in cases of “chronic” Lyme disease . In 2000, Blumenthal was the keynote speaker at a Connecticut meeting about Lyme disease, andhe and his wife were the co-chairs of a 2001 benefit sponsored by theGreenwich Lyme Disease Task Force. Later, he gave testimony by telephone to a New York State Assembly Health Committee hearing onLyme disease . In January 2004, he organized another Connecticut hearing to “eliminate the common use of excessively restrictive federal reporting criteria and correct the underreporting of new Lyme cases inthe state” [6, p.6].
In 2005, Blumenthal presented achievement awards to a former Lymedisease activist and to a pediatrician, Charles Ray Jones . Subsequently, Jones was summoned before the Connecticut Medical Examining Board for his treatment of children with suspected Lyme disease. In publicstatements about the case, Blumenthal said, “I'm very concerned there may be a perception, rightly or wrongly, that care for Lyme disease is discouraged by the charges against Jones” .
Since the announcement of the Infectious Diseases Society of America investigation, Blumenthal has continued to speak at Lyme diseaseadvocacy events, including a country club event for the National Research Fund for Tick-Borne Diseases (http://www.nrftd.org) and a patient conference in New Haven. He has been listed as an advisor for theadvocacy group Time For Lyme. In 2007, he also appeared in a DVD docudrama about chronic Lyme disease that a reviewer described as manipulative, partisan, and heavy-handed .
“'Is there a perception that I am advocating a position? Yes,' Blumenthal acknowledged. But he insisted the perception is incorrect” . However, a brief review of his active associations with Lyme disease advocacygroups suggests that the Attorney General's investigation was driven more by personal belief than by legal necessity or credibility.
Blumenthal's actions rightly have alarmed many scientists and physicians who are concerned about the political subversion of peer-reviewed science and evidence-based medicine. Moreover, his legal assault on treatment guidelines has heightened public confusion and patient angst about this common infection.
Potential conflicts of interest. E.M.: no conflicts.