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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Found this rebuttal to the above mentioned article (Edward McSweegan's OpEdNews article dated May 7, 2008 with the title Advocacy - Education = Epidemic")
"While some doctors treat Lyme disease, others hide behind "there is no chronic beast," even though the documentation "in their own" publications show there is latent and chronic disease. Yet, they deny its existence.
Why has it become so controversial?
::::::::
IDSA, et al - Con$cience = Scientific Fraud
by Dottie L. Heffron
While some doctors treat Lyme disease, others hide behind ``there is no chronic beast,'' even though the documentation ``in their own'' publications show there is latent and chronic disease. Yet, they deny its existence.
Why has it become so controversial?
Allen Steere, of Tufts University who has been said to discover Lyme disease, wanted to keep the grant funding in Rheumatology, redefining the disease as only a LATE arthritis in a knee.
There have been millions of dollars in grant monies and donations raised to continue research. Together with others they spun a web of fraud and deceit about the disease at the CDC's Dearborn, MI, Conference in 1994.
It is very important for all of us to understand what transpired at the Dearborn Conference. Labs from across the U.S. were invited to this conference participate in the proceeding to assess Allen Steeres' new proposal where Lyme would no longer be considered a Relapsing Fever organism (diagnosed by sequential Western blots to look for new and expanding IgM antibodies, which was Steeres' first proposal),but should only be diagnosed serologically as a late autoimmune arthritis in a knee.
We wonder how could anyone use this criteria to assess vaccines outcomes - a test that only detects 15% of all cases? That clearly means 85% of all cases of vaccine failure will not be detected.
Please read carefully what Gary Wormser says in this report:http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=266355&blobtype=pdf
Mr. Wormser is assessing Allen Steeres' IgG recommendation for the CDC to adopt, and that it was no good, yet it was adopted by the CDC anyway. Just who approved this standard, even though none of the laboratories agreed?
For Gary Wormser to report in the IDSA Guidelines that one has to have a positive test for Lyme means he has published scientific fraud. Similarly, the CDC says their testing for Lyme is ``valid,'' when it is hardly valid, if only 15% of the cases of Lyme are identified by the Steere IgG panel.
Imugen or Phil Molloy's lab reported only 14% tested positive to the Steere criteria, which means 86% of all cases were missed.
The Lutheran Hospital in LaCrosse, Wisconsin said Steere's proposal was 22%. This is it missed detecting 78% of all the known cases of Lyme.
The University of Connecticut's Lawrence Zemel was referring to Lyme as comparable to juvenile rheumatoid arthritis. He recommended adding band 50 for all childrens' blots.
The Roche Lab stated 28% were positive for 5 of 10 Steere IgG bands.
While Wadsworth had some different scoring system, it did not report on the accuracy of the Steere method.
MarDx Labs recommended adding bands 31 and 34, but were given CDC positive arthritis positive blood to falsely quality their test strips. Theirs were used in both vaccine trials.
The CDC Atlanta talked about mice, not humans. The mouse criteria were 2 out of 3 from OspC, 16 kD, 17.9 kD.
By showing the data at The Dearborn Conference it should make the reader understand the deceit and fraud that has been committed against mankind. It is not only inexcusable but so evil in its intent to destroy so many lives. One could only wonder if at one time they were good upstanding men and women, or just always driven by money, greed and power, not caring who they have hurt or destroyed in their wake.
Yale, Alan Barbour (a CDC officer) et al, are the owners of many patents on Lyme, and other methods of detection here in the U.S and abroad. Yale owns a patent for a scientifically valid Lyme test, but will not let anyone use it.
How can someone own a patent on a disease or method of detecting a disease? This is truly a conflict of interest. The very same people who are defining the diseases hold patents to make profits off of the sick by the selling of test kits. Why would they want us to get better when they can make more money off the sick and ailing?
The Blumenthal antitrust has opened the eyes of many. Some activists have been put into place by higher echelons to divide the Lyme community and keep them occupied with other trivial matters. Bills were written to fail by some activist groups to keep the diversion alive. Keeping the minion active doing trivial things is a tactic used by governments worldwide. In the antitrust, it simply asked the IDSA to disclose their organizational paperwork.
For two years, it went unanswered. Instead of disclosing their financial and vested interests, the IDSA chose to revamp their staunch 2006 guidelines. If they stood fast beside their own guidelines, why redo them? If they had nothing to protect, then why did they not just simply disclose this information? Even though they have not had one omission of guilt spring from their camp, revamping the guidelines says it all.
Now it is very well known, the scientific fraud and intent to do harm they have deployed on us.
As victims of their abuse, we can now seek retribution.
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