Lyme Disease Advocates Say CDC Allows Questionable Group to Dictate Treatment
Lymeblog News October 20, 2015 Lexington, KY USA By Mac McDonald, BA, MA, CCE Editor Lymeblog News
Atlanta, GA: The Centers for Disease and Control Prevention (CDC) group responsible for policy on Lyme disease violates federal law by extending preferential treatment to the Infectious Diseases Society of America (IDSA) says a petition created by a group of Lyme patient advocates.
The petition to End Preferential Treatment of the IDSA Guidelines for Lyme Disease was filed with the CDC’s Bacterial Diseases Branch on Wednesday, October 14.
The petitioners are exercising their First Amendment right to petition the government for “a redress of grievances,” along with a more specific right added by the Administrative Procedure Act, which provides “interested persons” with the “right to petition for the issuance, amendment, or repeal of a rule.”
"Why does the CDC, a public agency tasked with protecting the health of US taxpayers, promulgate the IDSA guidelines as policy, particularly when it can be demonstrated that the guidelines authors disallow, ignore, or reject a very large body of scientific evidence that contradicts their narrow view of this disease?"
The petitioners claim that “because of restrictions imposed by the critically flawed IDSA guidelines promoted by CDC, thousands of chronically ill patients
are harmed by misdiagnosis and denial of medically necessary treatment.
CDC’s failure to provide equivalent exposure for more recent guidelines
from the International Lyme and Associated Diseases Society
(ILADS) compounds the harm by omitting information about evidence-based
treatments that could help these severely ill patients recover from
this devastating disease.”
ILADS treatment guidelines now on National Guidelines Clearinghouse
“Exclusion of patient interests and disregard for competing guidelines makes the IDSA review process untrustworthy,”
Dr. Daniel Cameron, President of ILADS and lead author of the ILADS guidelines.
(Bethesda, MD Sept 21, 2015) — The Centers for Disease Control and Prevention (CDC) estimates that more than 300,000 new cases of Lyme disease occur annually in the US.
The International Lyme and Associated Diseases Society (ILADS) has
criticized the Lyme guidelines review panel of the Infectious Diseases
Society of America (IDSA) for excluding patient interests and
disregarding competing guidelines in its review plan.
The ILADS guidelines include share medical decision making and take patient
values into consideration.
Lorraine Johnson, JD, MBA, a coauthor and
Chief Executive Officer of LymeDisease.org, said “A lot of the treatment
decisions in Lyme disease depend on trade-offs. How sick is the
patient, how invasive is the treatment, what is valued by the patient?
Patients need to understand the risks and benefits of treatment options
to make informed medical choices. These guidelines provide that
ILADS is proud to announce their guidelines are now available on the National Guidelines Clearinghouse (NGC) website.
ILADS guidelines, Evidence Assessments and Guideline Recommendations in
Lyme disease: The Clinical Management of Known Tick Bites, Erythema
Migrans Rashes and Persistent Disease” bring the latest scientific
evidence to bear on the management of the illness.
The National Guidelines Clearinghouse (NGC) is an initiative of the Agency for Healthcare Research and Quality (AHRQ), under the umbrella of the U.S. Department of Health and Human Services. The NGC recently adopted the Institute of Medicine (IOM) standards for developing trustworthy guidelines, which define the highest level of excellence that a guideline can achieve. Guidelines posted on the NGC website must now satisfy these standards. Thus, the inclusion of ILADS’s peer reviewed guidelines on the NGC website demonstrates that they meet the ...
Dr. Willy Burgdorfer Talks About Lyme Disease, Science and Corruption
Lymeblog News April 17. 2015 Lexington, KY USA By Mac McDonald, BA, MA, CCE Editor Lymeblog News
"Money goes to people who have, for the past 30 years, produced the same thing--nothing."
"... it's a shame that, that includes physicians who don't even have the courage to tell a patient, 'You have Lyme disease and I don't know anything about it.'"
"There are lots of physicians around who wouldn't touch a Lyme disease patient. They tell the nurse, 'You tell the guy to get out of here. I don't want to see him.'' That is shameful."
Dr. Willy Burgdorfer gained worldwide recognition for his 1982 discovery of a tick-borne spirochete as the long-sought cause of Lyme disease and related disorders in the U.S. and Europe. The bacteria was named after him — Borrelia burgdorferi.
Although he had been retired for over 30 years, in 2007, Andy Wilson, director of the award winning documentary "UNDER OUR SKIN", interviewed Willy Burgdorfer, Ph.D., M.D., and Scientist Emeritus at the National Institutes of Health (NIH).
These were some of the highlights from this three-hour interview.
Andy Wilson: What are the similarities between Borrelia burgdorferi and syphilis?
Dr. Burgdorfer: The Lyme disease spirochete is far more virulent than syphilis. We don't know the end yet.
And [we] can't even make a [blood] smear with Borrelia burgdorferi and see the organism. It's there. But you don't see it. You cannot find this spirochete. Why not?
Note:According to the producers of this interview: "Just as we began filming, there was a pounding on the door, and we found ourselves facing someone who turned out to be a top researcher at the nearby Rocky Mountain Laboratories, a biolevel-4 NIH research facility."
"Standing on the porch, our uninvited guest said, 'I've been told that I need to supervise this interview. This comes from the highest levels. There are things that Willy can't talk about.'''
"We were stunned. After all, Dr. Burgdorfer had been retired from the lab since 1986."
"We were there to talk to a private citizen, about the history of a very public discovery that had put him on the short list for a Nobel Prize."
"Earlier that year, the NIH had refused our requests to interview any of their Lyme researchers. What was going on?"
"Why would the NIH want to censor information about the fastest growing bug-borne disease in the United States?"
"Fortunately, our iron-willed film director, Andy Abrahams Wilson, turned the NIH handler away, and what followed was an amazingly candid interview about Lyme disease--its dangers and its controversies."
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