Miscellaneous Articles
This spring’s massacre in Virginia provoked the usual flurry of televised grief and political pontification. This was followed by a Newtonian reaction from gun owners and the National Rifle Association (NRA). The action-reaction commentary that accompanies each new massacre is so predictable it is viewed as little more than stock footage; only the massacre location and the body count change. One wonders—with real dread—what kind of body count it would take to break out of the current steady-state cycle of political inertia.
Rather than wait for some larger American-made killing field to occur, it might be possible to use existing federal contracting rules and regulations to slow the flood of high-powered weapons and exotic ammunition into the civilian market.
The Department of Defense (DoD) and the various federal law enforcement agencies regularly solicit contracts for new weapons and ammunition from arms manufacturers. These usually are substantial contracts providing long-term profits. Competition for contracts is fierce. A quick look at an online list of U.S. gun manufacturers (home.comcast.net/~americanfirearmpage/firearms.htm) gives some idea of the number of potential bidders for federal weapons contracts.
Contracts, of course, make demands of the contractors. There are rigid technical specifications, delivery dates, maximum per unit costs, affirmative action and small business stipulations, and environmental and safety issues, to name but a few. So why not stipulate that contractors not sell to the civilian public, or re-import from third parties, the same weapons and ammunition they sell under contract to the Fed?
Manufacturers might howl at such language, but no one will be holding a gun to their heads insisting they bid for those contracts. They would be free to leave the federal market to their competitors. Of course, there is a huge profit difference between selling assault rifles to the DoD—which uses guns and bullets like you and I use oxygen—and selling to the smaller civilian market of Walter Mittys, Rambo wannabes, survivalists, gangsters, and the mentally ill.
Federal contracting rules are not very “sexy” remedies to the problem of casual mass murder, but neither was using tax evasion to nail Al Capone. Still, it got him off the street, and federal contracts similarly could get many types of high-capacity guns off the street.
Contracting regulations might also muzzle that ferocious mouth of the American gun manufacturers, the NRA. While the NRA agitates its members by wrapping itself in the (alleged) language of the Constitution and the self-evident right of self-defense, it is hard to get people equally agitated about a sentence in a federal procurement contract. No one is going to write to his or her congressman or send money to the NRA because Colt or Smith & Wesson does not like the wording in their multimillion-dollar contracts.
Federal contracting is a low-profile political solution that avoids Second Amendment debates by placing the burden of public gun sales and availability on the manufacturers. It will not necessarily prevent another Virginia Tech-style massacre, but eventually it should dry up the supply of larger, more powerful assault weapons, which are favored by terrorists, criminals, and delusional individuals on the edge of becoming one of the former.
Edward McSweegan is a microbiologist and writes a column on infectious diseases for The Capital newspaper in Annapolis, Md.
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Lyme disease is an infection caused by the bacterium, Borrelia burgdorferi, which is transmitted to people by the bite of a tiny deer tick. Last year, increased cases of Lyme disease were reported in various parts of the U.S. The large number of cases has been attributed to various factors, including better reporting, more deer, more ticks due to global warming, and more outdoor activities bringing more people into contact with ticks. Another contributing factor may be the activities of Lyme disease support groups.
In 1977, scientists described an “epidemic arthritis” in Lyme, Connecticut and named the disease after the town. Eleven years later, the first Lyme disease advocacy group was formed. Other groups, both local and national, quickly appeared. Today there are dozens of advocacy groups across the country, and support groups in every state, including states that had no endemic Lyme disease. One might think that with all these groups there would be fewer Lyme patients and less public confusion about this seasonal backyard infection. But that is not the case. The effective public education campaigns that helped reduce the incidence of AIDS, cancer and smoking, for example, have been absent from Lyme advocacy.
Instead of public education, Lyme activists have pursued a course of public confrontation with infectious disease experts and public health officials. The confrontation devolved from important questions about imperfect diagnostic tests and the lingering symptoms—such as fatigue and arthritis—of some Lyme infections. But where there was plodding science and imperfect medicine, many Lyme activists instead saw a conspiracy of academic physicians, public health officials and insurance companies bent on hiding the true scope and cost of a new tick-borne epidemic. And where there is a conspiracy, there must be conspirators.
Suspects were quickly identified. Accusations were made. Protests were organized. Scientific meetings were disrupted. Scientists were stalked and threatened. Raucous personal attacks continue today on Internet websites and blogs. One of my colleagues (a regular target of activist venom) recently remarked in the Hartford Courant, "I don't know why they hate me so much."
Advocacy groups coupled their shrill offensive with an equally aggressive defense of their personal beliefs about Lyme disease. Quack doctors and alternative therapies are promoted at activist meetings. People looking for Lyme disease advice are directed to certain “Lyme Literate” doctors and diagnostic companies, who in turn troll for new patients and customers at activist meetings and sit on the advisory boards of activist organizations. Borrowing a page from Intelligent Design advocates who seek to undermine the teaching of evolution by offering disingenuous “academic freedom” bills in state legislatures, Lyme disease activists also are urging legislatures to pass medical freedom bills to protect “Lyme Literate” doctors from state licensing boards and insurance investigations.
Caught in the middle of this war of words and tactics is a public confused about Lyme disease infections and looking for honest answers about prevention and treatment.
The website of a national Lyme disease activist group in New Jersey claims “much more funding is needed for Lyme disease education….” But that’s not true; there could be plenty of money for educational events and products. Instead, the same activists raised $3 million to create their own Lyme disease center. They did not like the results of federally funded, university-based research and clinical trials so they decided to create an institution more likely to produce data supporting their beliefs. (Perhaps they borrowed another page from the Creationists’ Discovery Institute.)
Public education was dealt another setback in 2006 when Lyme activists persuaded Connecticut’s publicity-seeking Attorney General, Richard Blumenthal, to investigate the Infectious Diseases Society of America’s (IDSA) Lyme disease treatment guidelines. Since the respected and widely used guidelines were at odds with the beliefs of activists and the practices of their Lyme literate physicians, they were denounced as a “restraint of trade.” Last week, Blumenthal—himself a long-time supporter of Lyme activists and the hero a recent propaganda film about Lyme disease—ended his personal investigation without filing any legal actions. The IDSA treatment recommendations remain unchanged, but the public has had to endure the spectacle of a prolonged political assault on evidence-based medicine.
Personal attacks, street theater and political maneuvers are counter-productive tactics in a war that only reproducible science and documented medical practice can win. Yet, the fog of war needs to be cleared away now in order to reduce the seasonal danger of ticks and the painful symptoms of Lyme disease and related infections.
Preventing tick bites is fairly straightforward. Recognizing common symptoms and receiving prompt treatment are critical to a safe and rapid cure. These common facts must be better conveyed to the public.
There are one or two Lyme disease groups (the American Lyme Disease Foundation, and the National Research Fund for Tick Borne Diseases, for example) that provide reasoned dialogue and objective education among scientists, physicians, patients and the public. It remains to be seen whether such groups can begin to close some of the fissures torn open by almost two decades of mistrust, misinformation, and misbehavior. If not, we can expect the number of Lyme disease cases to keep increasing.
Edward McSweegan is a microbiologist and writes a column on infectious diseases for The Capital newspaper in Annapolis, Md.
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The Waiting Line for Stem Cells In June 1942 there was just enough penicillin available to treat ten patients. This first antibiotic was so valuable and so hard to produce it had to be recycled from patients' urine. A similar scarcity plagued insulin therapy when it was used to treated diabetes twenty years earlier. Then a dying Leonard Thompson had to wait two weeks between insulin injections for scientists to prepare more of a crude pancreatic extract containing insulin. Even today, about 500 heart patients die each year while waiting for a donor organ to become available. Cutting-edge medical therapies are always in short supply and there is always a waiting line for them.
That will also be true for whatever therapies eventually emerge from the study of stem cells. Fortunately, the waiting line won't be as long as it could be; many people apparently are opting out on religious and political grounds. Stem cells are those wonderfully plastic cells that have the potential to mature into various specialized cells needed to make new bone, skin, organs and nerves. They are like college freshmen who have not yet declared a major and committed themselves to a single career track as accountants and teachers, or in this case, as red blood cells and neurons.
The problem is the best stem cells are harvested from surplus embryos (called blastocysts), which are microscopic clumps of 200-250 cells. Somehow these tiny aggregates got caught up in the violent politics of "pro-life" and abortion-even though they are collected from fertility clinics-and in 1995 Congress banned embryonic stem cell research from receiving federal funds. (The 1998 work that led to the first isolation of human embryonic stem cells was supported by private funds.) Yet, the potential for new therapies based on the versatile stem cell remains high, and efforts are underway across the country to bypass a religiously correct congress and a fundamentalist president in order to fund new experiments and start treatment trials.
California led the way with a recent $3 billion commitment from voters. Not wanting to miss the economic benefits of new technologies and biotech businesses, other states (Massachusetts, Connecticut, Wisconsin, New Jersey, Maryland and Illinois, for example) also are working on stem cell legislation. Yet, at least five other states specifically ban such research, and in the absence of federal guidance and traditional funding from the National Institutes of Health, a balkanized research effort is emerging across the country.
Eventually, this fragmentation will complicate patient recruitment for clinical trials of stem cell-based treatments. Doctors will not only have to screen patients for appropriate medical conditions, but also for state residency. Perhaps too they'll have to query patients about their political affiliations and religious beliefs. That's an ugly thought, but one necessitated by the organized opposition of biomedical Luddites determined to preserve other people's pain and suffering.
After putting up $3 billion, California taxpayers will expect to be the first to benefit from any stem cell therapies and products. They're not going to let Nevada residents cross the border and cut in line. They're certainly not going to let anti-abortion hypocrites from Bible Belt states take advantage of research fought and paid for by Californians. Those who oppose funding stem cell research should have no expectation of taking immediate advantage of medical advances arising from that research. Hypocrites and naysayers, move to the back of the line.
A few stem cell opponents have shown enough integrity to stay out of the waiting line altogether. During a stem cell hearing in Maryland last year, a wheelchair-bound opponent suggested that "each embryo destroyed for research is a life not allowed to reach its full potential." As proof, he offered up his young daughter who once was a frozen embryo in a fertility clinic. A compelling argument perhaps, yet he seemed to lack both an awareness of his own full potential lost to a paralyzing accident, and the imagination to see himself one day walking his daughter down the aisle after having his shattered spine repaired.
As with past medical advances, stem cells may prove to be something other than what today's hype and hysteria predict. More research will tell. In the meantime, a fundamentalist minority should not be allowed to prevent others from trying to reach their full physical and mental potential through advances in medical research.
Edward McSweegan is a microbiologist and writes a column on infectious diseases for The Capital newspaper in Annapolis, Md.
http://www.opednews.com/articles/life_a_e__mcswe_060715_the_waiting_line_for.htm
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When Lymees Attack
The brief summary below is drawn from memory and the Timeline document. There may have been other protests, threats and actions carried out by various Lyme disease activists and groups. These are some of the more memorable events.
1992 Activists demand case reports and abstracts from their “Lyme Literate” physicians be included in the program of the annual Lyme Borreliosis Conference. (Science magazine, June 5).
1993 “Lyme Conspiracy” theory presented at congressional hearing.
1994 Patient/activist protests at Yale Univ. Lyme disease forum.
1995 Activist rally in Trenton to protest the New Jersey Board of Medical Examiners looking into the activities of “Lyme Literate” physicians. Letter writing campaign to the New Jersey Board of Medical Examiners in support of “Lyme Literate” doctors.
1996 Activists posted bad reviews on Amazon.Com in order to reduce Dr. Alan Barbour’s book sales.
1997 Sixty activists protest at Yale University during annual Lyme Disease Symposium. Organized attacks on Dr. Alan Barbour for his NYT op-ed on Lyme disease: “In addition to letter writing, another way to ‘tell it where it counts’ is to contact Al Barbour's bosses.”
Organized attacks on Dr. Steve Ostroff (CDC): “…when we write to Ostroff's boss…”
Letter-writing campaign to NIH officials about Dr. Edward McSweegan.
Onlines attacks on Dr. Lawrence Zemel (UConn): “Like so many others Dr. Zemel, your career as a Lyme Crook is nearing the end.”
News reports about Lyme activism. “People are afraid of this group [Lyme Disease Foundation], and I am too," said Durland Fish, a Yale University entomologist who does research on Lyme. Speaking on the condition of anonymity, however, several scientists said they mistrusted the group's generally liberal views regarding intravenous antibiotics, given thefinancial backing the foundation has received from companies that sell those drugs." "[Dr. Alan] Barbour…quit as a medical adviser to the Lyme Disease Foundation's journal, saying a lot of its articles would have been rejectedby other scientific publications because they lacked standard research controls." "There are other accusations from scientists: that the Forschners organize noisy protests outside scientific conferences that they are bankrolled by companies that make or administer intravenous antibiotics, one treatment for chronic Lyme" (Wash Post, April 21).
"…the [LDF] conferences have taken on the flavor of religious revival meetings, with patient-participants clapping and booing at the lectures. The atmosphere stifles free scientific debate, said Dr. Alan Barbour, because speakers from the easy-to-treat school are vilified, while doctors from the chronic camp--known to patients as ``Lyme-friendly'' or ``Lyme- literate''--are applauded" (Hartford Courant, July 3).
1998 Attacks on CDC’s Dr. Dave Dennis: “Besides us, who does David Dennis report to?? Who is his boss? We are paying him and we are not satisfied with his performance. I think we should all complain.” “Dr. Dennis works for us yet he, along with many other NIH and CDC employees, seem to ignore our very existence.”
Another protest at Yale U. “Protest organizers indicate that Yale's academically spawned guidelines for diagnosis and treatment of Lyme disease are obsolete, biologically unfounded and ethically suspect. Conflict of interest is also suspected since Robert Schoen, MD (Chair of the symposium), as well as certain featured speakers, are paid up to $560/hour as insurance consultants and expert witnesses. Schoen and Allen Steere, MD who has been credited with "discovering" Lyme over 20 years ago, have given court testimony against physicians who do notfollow their stringent guidelines.”
1999 Activists protest involvement of ALDF in March 1999 "Lyme Disease Prevention Month" in CT, NJ and PA.
Activists invade NIH campus to protest the “Astute Clinician” lecture given by Dr. Allen Steere. Activists gather outside the Office of Professional Medical Conduct (OPMC) in Manhattan to protest investigation and sanctions against Perry Orens of Great Neck, NY.
Activists try more censorship: “McSweegan has written a very scientifically flawed article with few references about Lyme disease for the quackwatch site. I think we should write to the NIH about this article by a government employee.”
2000 Activists demonstrate against Allen Steere outside the Spirochete Biology Gordon Conference in Ventura, CA (“Wherever ‘they’" go, we will be there!”).
Activists gather in Gettysburg, PA for a "Ticked Off and Fed Up" (TOFU) rally.
Activists announce GAO investigation of federal Lyme disease programs accusing federal scientists and officials of “physician harassment,” “retaliation,” “conflicts of interest,” ”controlled science” and “CDC indifference.” (GAO later finds no scientific or financial fault with federal programs.)
Protesters show up at annual meeting of the Am. College of Rheumatology in Philadelphia to protest against Allen Steere.
Effort to file professional complaints against Dr. Leonard Sigal: “I am in the process of filing a complaint against him to the NJ Board of Medical Examiners.
…I have chosen to do this not as a means of revenge, but rather because this man has caused great harm to many Lyme sufferers not only in NJ but throughout this country.”
Activists urged to write to Mass. Med. Board to complain about Allen Steere in the hopes of triggering a medical investigation. (The effort fails.)
Activists gathered outside the Hotel Pierre in NYC to disrupt annual ALDF conference and bother Allen Steere.
Activists picket in NYC after Joseph Burrascano is charged with medical misconduct by the NY OPMC. Activists call for investigation of the OPMC.
2001 Local NY activists travel to Albany to demand legislators “protect the right of Lyme patients to receive effective medical care.”
TOFU organizes Lyme disease rally in Gettysburg, PA.
Activists organize online protest against the NY OPMC for its investigations of five “Lyme Literate” doctors.
NYT Magazine reports stalking and death threats against Allen Steere (June 17).
2002 Activists demonstrate outside the Long Island office of State Senate Health Committee Chairman Kemp Hannon because he “refuses to support any companion legislation in the Senate to the OPMC Reform Bill A11330....”
Activists gather outside the Grand Hyatt, NYC, to protest the 9th International Conference on Lyme Borreliosis.
2003 Activists return to Albany, NY to lobby state senators in support of two bills before the Assembly.
2004 Activists again return to Albany to lobby legislators to pass two bills related to Lyme disease.
2005 Gleeful online cheers at news of ALDF Director David Weld’s death.
“A 47-year-old woman accused of threatening an assistant attorney general may have harassment charges against her dropped if she stops barraging state officials with information about Lyme disease. Superior Court Judge Patrick Clifford said Tuesday that Kathleen Dickson's criminal case will end if she discontinues a massive e-mail and fax campaign detailing her complaints about the scientific community's approach to fighting Lyme disease.”
2006 Activists protest content of CDC Lyme website, a NIH Lyme website, and CDC warning about certain diagnostic tests for Lyme. (The content remains unchanged.)
Activists organize a Lyme Rights Rally at CT State Capitol.
Activists protest at NY Medical College to denounce updated Lyme disease treatment guidelines from the IDSA.
An online petition against the guidelines is set up, and “Lyme Literate” doctors demand retraction of IDSA Guidelines.
CT Attorney General and Lyme activist Richard Blumenthal launches antitrust investigation of IDSA. (Accused of “playing doctor,” Blumenthal later fails to indict or prosecute anyone, or overturn the IDSA guidelines.)
Activists organize Lyme Rights Rally at NYMC and issue threat to opponents: “We will not allow the IDSA…to take our disease away.” “Those who stand in our way must be moved aside using every trick in the rule book.” “The smart ones will join out team now. The others will have to suffer the consequences….”
Wild online attacks on NYMC’s Dr. Gary Wormser: “…gary wormser is a mass murderer. he is a deeply disturbed, emotionally crippled high functioning psychopath. he doesn't even acknowledge postlyme syndrome. this letter, as well as his article in eid authored with the criminal shapiro, is absolutely ridden with lies and exaggerations. why would he do this? because his disgusting plans for lyme disease backfired. in the back of his mind, and dattwylers, are fears of massive civil lawsuits and/or imprisonment for the atrocities they have aimed against the american people.”
More online attacks on CDC’s Dave Dennis: “He coordinated a massive propaganda war aimed at U.S. borreliosis patients. Who authorized him to do this?”
Death threats against BU’s Dr. Mark Klempner, who organized treatment trials for Lyme: “At the link provided is a picture of Klempner that you can download and memorize just in case you see him on the street. He looks to be a small man so a .22 caliber should be adequate".
2007 Activists organize letter-writing campaign against Forbes magazine for “defaming” their doctors.
Activists call for protest in Atlantic City of over epidemiologists’ plans to revise the “National Surveillance Case Definition for Lyme disease.” Pickets gather outside Convention Center. (The proposed changes to the surveillance definition are passed.)
Activists use Internet to spread rumors that Lyme disease is a deliberate biological weapon engineered at CDC and NIH, and the CDC epi training program is a spy agency. “The number of Steere camp Lyme researchers with a background in the Epidemic Intelligence Service (EIS) and/or biowarfare research is too numerous to be pure co-incidence.”
Protest rally at the University of CT Health Center, Farmington CT. “We demand that UCONN show us the test that is being used to prove that the lyme spirochete has been eradicated. Many of us in the lyme community have been suffering for many years with active infection. It's time for Dr. [Henry] Feder and others to back up there claim of short term cure.”
Activists and quack doctors try to link Lme disease to autism.
Activists raise $3M to start their own ‘research center’ with Dr. Brian Fallon at Columbia U. Later, Fallon reports in the journal Neurology, “that the Lyme patients…showed no more cognitive improvement at the trial thanthose who received a placebo.” He is denounced by some of his earlier supporters: “I have seen and still see Lyme patients/activists attack and question Dr. Fallon, because the findings of his study are thought to be not corresponding with their believes.”
2008 Lyme Protest at the office of Congressman Frank Pallone (NJ-6) over HR 741 (Lyme bill).
Maryland activist tries to get Edward McSweegan’s infectious disease column dropped from the Annapolis newspaper.
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Article: Pathogens & People: Tick tock. Tick tock.It's tick time in Maryland
Article from:Capital (Annapolis) Article date:April 30, 2006Author:Edwarad McSweegan Copyright
Spring is here. Flowers are blooming. Grass is growing. And disease-carrying ticks are beginning to stir after a brief, mild winter. Time to start thinking about how to recognize and prevent Lyme disease, that backyard nuisance spread by the bite of the impossibly small deer tick.
So far this year, Maryland has reported 97 cases to the Centers for Disease Control and Prevention. Last year there were 1,211 cases in Maryland, and a total of 21,304 cases throughout the U.S.
Lyme disease is a multistage, inflammatory infection caused by the bacterium Borrelia burgdorferi. Most of the time the infection presents as a "bull's-eye" skin rash with various arthritic, neurologic or …
Read all of this article with a FREE trial
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“Lyme vaccine demonized by advocacy groups.”
http://www.nature.com/nature/journal/v440/n7082/full/440278b.html
Nature 440, 278 (16 March 2006) |
doi:10.1038/440278b
Lyme vaccine demonized by advocacy groups
Edward McSweegan1 1692 Barrister Court, Crofton, Maryland 21114, USA
Sir: As a microbiologist who managed a federal programme on Lyme disease in the 1990s, I consider that any new clinical trials of a vaccine candidate based on the protein OspA, as mentioned in your News Feature "Uphill struggle" (Nature 439, 524-525; 2006), should be confined to Europe, for three reasons.
First, Lyme disease is non-communicable, readily treatable with common antibiotics and geographically localized in the United States. Neurological cases - where treatment can be problematic - are more common in Europe and a new vaccine may reduce the costs and consequences of infection.
Second, European experience with the widely used tick-borne encephalitis virus (TBEV) vaccine may facilitate vaccine-trial recruitment and greater public acceptance of a new Lyme vaccine.
Third, Europe is a less litigious environment and is largely free of organized Lyme-patient advocacy groups. In the United States, activists have turned Lyme disease into everyone's backyard bogeyman. They have demonized experts for their views on treatment and prevention, and hired lawyers to successfully argue the dangers of vaccine-induced autoimmunity (Philadelphia Inquirer B03, July 9 2003). The activists are already using Internet discussion groups to warn against a new vaccine.
One of them recently wrote "I would encourage all Lyme patients to consider writing letters, emphasizing the lack of demand for the last vaccine, and also the fact that any future vaccines can expect a lack of cooperation, protests, legal quagmires, etc." A careful, hysteria-free trial of the new OspA vaccine in Europe may help to undermine the opposition to it in the United States.
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Lyme disease is also an Online Hazard
When I was checking some information for last month’s column on hepatitis, I came across the Borland-Groover Clinic web site. A large banner at the top of their page read, “Web Warning: We have found most hepatitis discussion sites on the web to be a waste of time, or worse.” That’s a warning that should be posted for more health-related web sites, including those sites devoted to everyone’s favorite backyard menace, Lyme disease.
Summer has arrived, and with it has come the annual burst of media stories about Lyme disease, tick checks and DEET-based repellents. (At the end of May, I counted 516 such stories on Google News.) These stories follow a similar pattern: a “victim” of Lyme disease describes a long list of bizarre and painful symptoms that have persisted for years, an endless quest for more and more antibiotics from reluctant doctors, and finally the loss of medical insurance and personal savings. Readers and viewers are then directed to web sites and organizations where they will find similar frightening anecdotes.
Lyme disease is a bacterial infection transmitted by deer ticks. It is widespread in the United States; so far this year the Centers for Disease Control have counted 3,686 cases. In Maryland, there have been 192 reported infections. Fortunately, Lyme infections are not contagious, not fatal and respond to antibiotics. Most of us unlucky enough to be bit by a tick can expect a distinct skin rash and “flu-like” symptoms. About ten percent of patients may have lingering arthritic or neurological complications though such complications are not unique to Lyme infections.
What is unique about Lyme infections is the level of hysteria they can generate. The Internet is full of personal anecdotes and wildly inaccurate information. Many online Lyme support groups and other organizations add to the misinformation by promoting unproven treatments and unreliable diagnostic methods.
Writing in The Pediatric Infectious Disease Journal, two infectious disease experts at the University of Connecticut reviewed the quality of online information about Lyme disease. Most of the sites they surveyed contained inaccurate or incomplete information. One of the authors, Henry Feder, told Reuters Health, “The problem is that some of these sites may have had an agenda other than education. They make the unusual seem common.” As the authors noted in their paper, “The challenge for medical providers is to convince worried patients…that some of the Internet-recommended testing and treatment…is inappropriate. This convincing can take multiple visits, debate, compromise and time.”
That level of misinformation also prompted Kent Sepkowitz, director of infection control at Sloan-Kettering, to vent similar feelings in the New York Times. He wrote: “The vast, lumpy terrain of Lyme disease is a confusing place for doctor and patient alike. According to some, Lyme is able to cause any imaginable symptom, yet laboratory diagnosis remains famously elusive. This combination of plasticity and stealth makes it a convenient explanation for any ailment that otherwise makes no sense.”
Diagnosis is fertile ground for online misinformation and deceptive marketing. So much so that in February, the CDC published a warning about Lyme disease testing. They cited three types of Lyme tests whose accuracy and clinical usefulness could not be determined. The CDC said patients should be “encouraged to ask their physicians whether their testing…was performed using validated methods and whether results were interpreted using appropriate guidelines.”
Guidelines are navigation aids for both physicians and patients. But if someone doesn’t like the guidelines, there’s nothing to stop them from making up their own. That’s what one group of private practice physicians did. They posted a set of Lyme treatment guidelines on a website, and then proceeded to follow the guidelines they had written for themselves.
Other organizations and advocates have been even more creative in trying to redefine Lyme disease and its treatment. They are seeking to change state laws under which physicians and insurers operate. In March, for example, the Maryland legislature considered a bill supporting the long-term treatment of so-called chronic Lyme disease. It was struck down in the Senate. Afterward, Sen. Roy Dyson (R-St. Mary’s) said, “We’re not in the business of directing protocol[s] for doctors.”
So the battle for accurate, honest information continues online, in the legislatures and in the clinics. It is an information war and right now it’s hard to tell who is winning. One clue is offered by a woman in an Internet chat group who wrote, “I am convinced I have Lyme Disease. I am seriously considering treating myself. Am going to order meds from an offshore pharmacy.”
You can help protect yourself from online misinformation by reading, “10 Things to Know about Evaluating Medical Resources on the Web,” at www.nccam.nih.gov/health/webresources. For reliable information about Lyme disease and ticks, see: www.nlm.nih.gov/medlineplus/lymedisease.html.
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Lyme Disease and the Politics of Public Advocacy
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 [1]. Groups such as the New Jersey Lyme Disease Association and Connecticut's Time for Lyme have acknowledged their involvement [2], but Blumenthal's long record of legal and political activism on behalf of patients with Lyme disease suggests a significant degree of self-motivation.
Since at least 1999, the Attorney General has participated in Lyme disease rallies and conferences in Connecticut. In February 1999, he held a hearing on insurance coverage for long-term intravenous treatment of Lyme disease and drafted a bill to mandate such coverage [3]. 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 [4]. In 2000, Blumenthal was
the keynote speaker at a Connecticut meeting about Lyme disease, and he and his wife were the co-chairs of a 2001 benefit sponsored by the Greenwich Lyme Disease Task Force. Later, he gave testimony by telephone to a New York State Assembly Health Committee hearing on Lyme disease [5]. 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 in the state" [6, p.6].
In 2005, Blumenthal presented achievement awards to a former Lyme disease activist and to a pediatrician, Charles Ray Jones [7]. Subsequently, Jones was summoned before the Connecticut Medical Examining Board for his treatment of children with suspected Lyme disease. In public statements 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" [8].
Since the announcement of the Infectious Diseases Society of America investigation, Blumenthal has continued to speak at Lyme disease advocacy 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 the advocacy 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 [9].
"'Is there a perception that I am advocating a position? Yes,' Blumenthal acknowledged. But he insisted the perception is incorrect" [10]. However, a brief review of his active associations with Lyme disease advocacy groups 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.
Acknowledgments
Potential conflicts of interest. E.M.: no conflicts.
Edward McSweegan
Crofton, Maryland
References
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for Lyme disease. Clin Infect Dis 2008;47:1197-9.
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guidelines process: gives hope to thousands of Lyme disease patients. Available at: http:
//www.lymediseaseassociation.org/NewsReleases/20061116.html. Accessed 1 October
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4. Ramp S. While Lyme disease runs rampant, the medical community gets caught up in an
elaborately twisted power struggle over technicalities. Fairfield County Weekly. 20 May
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.html. Accessed 1 October 2008.
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0129lyme.pdf. Accessed 1 October 2008.
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disease.org/video01.htm. Accessed 1 October
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on the line. Northeast Magazine 17 September
2006.
9. Upton J. Media watch: film. Lancet Infect Dis 2008; 8:358.
10. Hathaway W, Waldman H. Lyme disease experts: butt out, Blumenthal. The Hartford
Courant. 21 March 2007. Available at: http://www.aldf.com/news.shtml. Accessed 5 October
2008.
Reprints or correspondence: Dr. Edward McSweegan, 1692 Barrister Ct., Crofton, MD 21114 (mcsweegan@nasw.org).
Clinical Infectious Diseases 2008; 47:1609-10
2008 by the Infectious Diseases Society of America. All
rights reserved. 1058-4838/2008/4712-0027$15.00
DOI: 10.1086/595684
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http://theangrydoctor.blogspot.com/2007/10/crock-of-chronic-lyme-disease.html
Saturday, October 13, 2007
THE CROCK OF CHRONIC LYME DISEASE
My apologies for not writing in so long. There are many things I read that I want to blog about, but then I watch television.
I want to get right back on the train with a round of applause for one of the best articles I have ever read in the New England Journal of Medicine. Their critical appraisal of “Chronic Lyme Disease” (and I LOVE the quote marks) was short and sweet, and there are so many takeaway messages.
The first, of course, is that there is NO good evidence of any such entity in the medical lexicon. What I mean to say is, it is NOT A RECOGNIZED INFECTIOUS DISEASE! Here’s a quote from the Infectious Disease Society of America website:
an extensive review of scientifically rigorous studies and papers available to date, has determined that there is no convincing biologic evidence to support a diagnosis of chronic Lyme disease after completion of the recommended treatment.
But don’t tell the chowderheads at so-called “support groups” like this one. They are all over the country (even in places where Lyme is NOT endemic), composed of rich people, and have NOTHING BETTER TO DO but use the internet to obsess over their pathetic lives.
Apparently, for the believers, you do not even need to have a positive antibody test against Borrelia burgdorferi to make the diagnosis., because it might not be valid unless done by a “specialty laboratory”, which is, of course, a scam, since they are performing tests that are not even validated or supported by the FDA, and are using criteria that are based only on their own fantasy values.
This is the second takeaway message: that there’s a sucker born every minute. In this case, the sucker is the poor sap (or self-important “expert” patient) who seeks out the “Chronic Lyme specialist” (laugh heartily, men-of-science) for weeks, months, even YEARS of chronic antibiotic therapy which is proven to do NOTHING except cause complications of side effects and catheter infections (one resulting in DEATH, according to the article).
The article goes on to discount every theory that the “Chronic Lyme” fraudsters purport. But the most disturbing part of the article comes near the end. Here’s a quote:
The attorney general of Connecticut has begun an unprecedented antitrust investigation of the Infectious Diseases Society of America, which issued treatment guidelines for Lyme disease that do not support open-ended antibiotic treatment regimens.
An attorney general is actually pursuing legal action against an academic society because they disagree with his unscientific view of a bogus clinical entity that is disproved by science. Saying I am shocked and nauseated does not begin to describe my true feelings. How is this possible in 2007? Why are lawyers pretending to be scientists??? Does this guy own a bunch of these “specialty” clinics or something?
That’s the final takeaway message: science is now being dictated to by people who have absolutely no idea what they’re talking about, and aren’t interested in real research.
Thank you Henry M. Feder, Jr., MD er al, and the Ad Hoc International Lyme Disease Group for the article of the year!!
MIKE
I am an internist doing primary care and hospital medicine in New York City. I hate quackery and those who profit from it. I also detest lawyers (except my brother of course).
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http://sci.tech-archive.net/Archive/sci.med.diseases.lyme/2006-05/msg00549.html
From: Edward McSweegan <emcsweegan@xxxxxxxxxxx>
Date: Tue, 16 May 2006 21:05:08 GMT
X-No-Archive: Yes
Recently, I received a copy of Kathleen Dickson's May 9 missive in which
she accused me of being everything but the Anti-Christ and Evil
Incarnate. It was, apparently, the latest in a list of hundreds of such
rantings during the last two or three years. I'm not sure what
precipitated her online interest in me, but it doesn't look as though
it's going to end any time soon. Lawyers love these kinds of
unrestrained--and written--outbursts, but they also know there is little
point in trying to sue the penniless.
This reminds me of the Maryland professor who was similarly assaulted
online for no other reasons than mistaken identity and the Web-based
ability of the disturbed to annoy other people over trivial matters (The
Scientist, 2/14/05). In a subsequent letter to the editor I recounted
similar incidents among my colleagues and myself, and noted there wasn't
much anyone could do about them.
What's the point of this woman's relentless barrage of incoherent venom?
Damned if I know. Some friends suggested these tiresome denouncements
were intended to provoke some kind of public response or dialog from me.
Maybe so, but I'm reluctant to ascribe rational motives to irrational
acts. I'm even more reluctant to engage the online equivalents of
rambling street people in debate.
According to articles in The New London Day, this Dickson person was
charged with second-degree harassment and threatening, and with being a
fugitive from justice. Then The Hartford Courant carried a story about
her threatening a Connecticut assistant attorney general and "barraging
state officials with information about Lyme disease." The article went
on to note: "She was charged with two counts of second-degree
harassment and one count of second-degree threatening and was granted
accelerated rehabilitation…." Evidently, some things can't be rushed.
I recently received a letter from someone who can state authoritatively
that: "The Stonington Police Department has had many contacts with
Kathleen." I don't doubt it, and it should give comfort to her
neighbors and numerous Connecticut state officials that people with
handcuffs and warrants are aware of this agitated typist.
It's unfortunate that many of her online histrionics are being provoked
by one or two other people whose only reason for clinging to the
wreckage of the Lyme newsgroup is to antagonize this troubled creature.
Their presence seems to be adding to my vilification since Dickson
believes she is arguing with me. No effort on the part of other posters
has been able to convince her otherwise. Such beliefs tend to degenerate
into assertions like this posting: "Look McSweegan, if you were not
McSweegan, surely the REAL McSweegan would be after us by now?"
How do you argue with such thinking?
Well, you don't.
I'm all for anonymity and privacy on the Internet, but I have to draw
the line at appropriating someone else's identity, however passively it
may have been done. Those who have, and those who feel the need to
defend me as a means of irritating this very confused person, please stop. I'm a big boy; I can defend myself..... if I'm so inclined.
That said, I would like to correct a few inaccurate assertions posted on
the Internet by Dickson and other self-styled activists.
Among the corrections:
I am not dead.
I do not have cancer.
I am not divorced.
My wife does not own a house in Bethesda.
I do not live in Old Lyme.
My father was not the town tax collector.
I did not lose a $2 million dollar suit involving the wacky Forschners.
Quite the opposite.
I do not have any neighbors who work for BC/BS. (As far as I know.)
I am not "heavily invested in Insurance Companies, and SmithKline."
I do not work for Glaxo.....but if they want to make an offer.
I do not know someone named Frank Drury.
I don't play baseball or even watch it.
I am not the "liaison between Insurance and Yale, and UCONN Health
Center and the CT DPH, and DCF the ALDF."
I do not hunt bears.
I do not make "life and death decisions" for anyone.
My house is not "full of guns."
I am not responsible for Lymerix "ever getting on the market in the
first place."
I did not blow the whistle on myself. (Is that even possible?)
I am not looking for another job.
I have not been fired.
I did not work for the Navy.
I did not go to Rutgers.
I do not work for the CDC.
I do not work for SmithKline.
I am not being investigated.
I am not being indicted.
I am not going to jail.
Did I mention I'm not dead?
I am not a stalker. (It's a crime and, frankly, I have little interest
in overindulged, underemployed, paranoid, delusional, middle-aged
women.)
I did not cost Glaxo $200 million. I think I would have heard about
that.
I am not "scared to death."
I do not have an AOL account. Not since 1995, anyway.
I am not a bioweapons expert.
I have not interfered with the DoD's...Lyme vaccine. (They never worked
on one.)
I did not "screw up this country in SO MANY WAYS."
I did not "approve the now known-to-be-BOGUS Lyme testing."
I am not "guilty of deaths on three continents."
I do not "most certainly know about the Lyme SCAM in Connecticut."
I am not "complicit in ruining tens of thousands of Lyme patients' lives
through...fraudulent science."
I was not in NYC taking pictures of people. I imagine it was this guy
(http://members.aol.com/katahoula/NYC.html). I was probably at work,
but a simple FOIA request can settle the matter.
That about covers it. At least until some new and bizarre and
contradictory accusation is posted. (Someone let me know how many
minutes it takes.) Like Lewis Carroll's White Queen who could believe
as many as six impossible things before breakfast, some Usenet denizens
will always have room for one more wacky notion or one more vast
conspiracy theory.
E.M.
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BIOCRIMES AND MISDEMEANORS
Commentary by Edward McSweegan
August 17, 2004
As a graduate student twenty years ago, I had a departmental recruiting
poster tacked up on the wall next to my desk. It read, in part, "If
you are curious, patient, and awfully damned intelligent, consider a
Ph.D. in microbiology." In 1984 a degree in microbiology seemed like a
good idea.
AIDS was just exploding on the scene. Lyme disease was racing through
the Northeast. Evidence was emerging that a bizarre neurologic
disease might be caused by an equally bizarre infectious agent called a
prion. And recombinant DNA techniques, discovered a decade earlier,
were rapidly helping to create a multi-billion dollar industry in the
U.S.
But now in 2004, a degree in microbiology, or even a vague interest in
infectious diseases, might not be such a good idea. In fact, it might
get you arrested by the FBI.
After 9/11 and the October anthrax mailings, a series of laws and
regulations were hastily enacted to discourage future acts of
bioterrorism and misguided hoaxes. The anthrax mailer has not been
caught and no other bioterrorists appear to be lurking on the horizon.
Deprived of new suspects, terrorists, plagues or other insidious acts
of microbiology, the FBI has turned its attention to softer targets.
In the last two years they have used provisions of the 2001 Patriot Act
and the 2002 Public Health Security and Bioterrorism Preparedness and
Response Act to arrest and prosecute university professors, graduate
students, and at least one New York artist. None of these U.S.
citizens are terrorists, but they have all been run to ground by the
FBI's need to be seen doing something...even if it's the wrong thing.
Two years ago, a University of Connecticut graduate student (Tomas
Foral) became the first person to be arrested under the Patriot Act.
His crime: moving a 35-year-old sample collected from an
anthrax-infected cow from one freezer to another freezer. This spring,
world-renowned plague expert and physician Thomas Butler was sentenced
to two years in prison. His crime: mislabeling a FedEx package
containing plague samples, and getting into billing disputes with Texas
Tech University accountants over his research funds.
In July, a federal grand jury indicted a University of Pittsburgh
genetics professor, and an artist at the State University of New York
at Buffalo. As with Butler and Foral before them, neither man is
charged with any actual acts of bioterrorism. Rather they are charged
with mail and wire fraud. The artist, Steve Kurtz, got two samples of
harmless bacteria from Pittsburg Professor Robert Ferrell who
apparently failed to fill out the appropriate paperwork. Both men are
facing the possibility of 20 years in prison.
The Patriot Act prohibits the possession of "any biological agent,
toxin, or delivery system of a type or in a quantity that, under the
circumstances, is not reasonably justified by a prophylactic,
protective, bona fide research, or other peaceful purpose."
Phrase such as "biological agent," "reasonably justified," and
"peaceful purposes" are open to interpretation; if one is inclined to
be reasonable, especially about criminal intent. Unfortunately, the
FBI and the Justice Department have shown no interest in being
reasonable or responsible defenders of the public's safety.
Last fall, D.A. Henderson, the Johns Hopkins University professor who
eradicated smallpox in the 1970's and advises the federal government
on bioterrorism, declared the FBI has "lost all perspective" and "is
out of control." In June, Dr. Barbara Rosenberg, Chair of the Arms
Control Center's Scientists Working Group on Biological and Chemical
Weapons, said, "Clearly the Justice Department hasn't the foggiest idea
of what is significant."
Instead of focusing on real terrorists and lone lunatics, they are
using the Patriot Act as a crowbar to pry open the innocuous trivia of
ordinary people's lives, and leveraging Mickey Mouse complaints, sloppy
paperwork and professional disputes to the status of federal crimes
worthy of indictment, prosecution and imprisonment.
The result is widespread fear among scientists. Some researchers have
stopped working on certain dangerous pathogens and some universities
have destroyed valuable collections rather than risk a paperwork mishap
that might attract the FBI. Cornell professor and Nobel Laureate
Robert Richardson noted that before the Patriot Act thirty-eight of his
colleagues were working on "select agents." Now there are two.
Anthrax expert Paul Keim told the Los Angeles Times last October, "All
of us are worried we are going to fall into some trap that we don't
know about."
One of the biggest traps may be the new Material Transfer Agreement
(MTA) people now must sign in order to get specimens from the American
Type Culture Collection (ATCC), a national archive of biologicalmaterials.
The Agreement states,
"The Purchaser shall not distribute, sell, lend or otherwise transfer the Material... for any reason."
That may sound reasonable, but how do teachers and professors hand out
classroom samples and do student experiments without violating the ATCC
decree not to distribute, lend or otherwise transfer? To follow the
letter of the law, every Biology 101 class could generate hundreds of
MTAs. How do researchers and graduate students collaborate if every
test tube and Petri dish must generate a paper trail from person to
person, sample to sample, and experiment to experiment? As University
of California at San Diego Professor Natalie Jeremijenko observed,
"They're going to have to indict the entire scientific
community." Medical research and science education are becoming the
new causalities in the war on terror.
As the arrest of Steve Kurtz suggests, the greatest threat may be to
amateur scientists. The Society for Amateur Scientists (SAS) defines
an amateur as "anyone who wants to do science simply for the pleasure
of finding things out." Unfortunately, that also may be the FBI's
definition of a terrorist.
Shawn Carlson, Executive Director of the SAS and a regular contributor
to Scientific American's monthly amateur scientist column, denounced
the "demonization of citizen scientists" in a 2002 press release. He
noted, "My fellow citizen scientists are very worried right now."
The federal assault on science and scientists is an important issue
that has not been well covered outside professional journals and
science magazines. It should be. When federal agents, backed by
federal laws, come to view classrooms as terrorist training camps,
backyard hobbyists as dangerous lunatics, and professors as domestic
terrorists, then we are all in danger.
Professional and amateur scientists, and the science teachers who first
inspired them, share a common threat and should form a common front
against the indiscriminate use of laws meant to protect us from foreign
terrors. Benjamin Franklin-patriot, rebel and amateur
scientist-once noted, "We must all hang together, or assuredly we
shall all hang separately." So far, the FBI has been hanging us
separately.
Edward McSweegan is a working microbiologist and writes the "Pathogens
& People" column for The Capital newspaper in Maryland.
http://www.washingtondispatch.com/article_9829.shtml
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Additional Publications
Feder, HM, et al.. A Critical Appraisal of "Chronic Lyme Disease" NEJM 357 , 1422-1430 (2007)
McSweegan E. The Lyme Vaccine: A Cautionary Tale (Letter) Epidemiology and Infection 135 , 9-10 (2007)
McSweegan E.. Anti-Tumor Necrosis Factor-Alpha: Treatment for Lyme Borreliosis. Journal of Infectious Diseases 196 , 1866 (2007)
McSweegan E. Lyme vaccine demonized by advocacy groups. Nature 440 (7082) , 278 (2006) PubMed ID:(16541048)
McSweegan E. Review of John Kelly’s The Great Mortality: An Intimate History of the Black Death, the Most Devastating Plague of All Time JAMA 293 , 1524 (2005)
McSweegan E. Anthrax and the etiology of the English sweating sickness. Medical hypotheses 62 (1) , 155-7 (2004) PubMed ID:(14729023)
McSweegan E. Biodefence funds have tight strings attached. Nature 427 (6973) , 393 (2004) PubMed ID:(14749802)
McSweegan E.. Review of Vincent Cirillo’s Bullets and Bacilli. JAMA 292 , 506-507 (2004)
McSweegan E. Screening foreign scholars. Science (New York, N.Y.) 297 (5582) , 771-2 (2002) PubMed ID:(12162320)
McSweegan E.. Campylobacter jejuni Encyclopedia Britannica (2002)
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