CDC stands by IDSA Lyme treatment guidelines
The Mayday Project, a Lyme patient advocacy organization, issued the following press release on Dec. 15, 2015:
CDC Refuses to End Preferential Treatment of IDSA Lyme Guidelines; Patient advocates cite CDC/IDSA conflicts of interest
WASHINGTON, DC, December 15—In response to a citizen petition filed with the Centers for Disease Control and Prevention (CDC) on October 14, 2015, the CDC refused to end the preferential treatment it provides to the Infectious Diseases Society of America (IDSA) by endorsing and promoting IDSA’s 2006 guidelines for diagnosis and treatment of Lyme disease, while it continues to withhold information about more recent, peer-reviewed guidelines from the International Lyme and Associated Diseases Society (ILADS).
Since they were first published in 2000, the IDSA guidelines for Lyme disease have been the subject of intense controversy, including an antitrust investigation by the state of Connecticut in 2008 and hundreds of protests. The IDSA guidelines restrict antibiotic treatment to two to four weeks and dismiss the existence of chronic Lyme disease, despite hundreds of scientific studies documenting cases of persistent infection after short-term antibiotic treatment. In contrast, the ILADS guidelines recognize chronic Lyme and recommend that the “duration of therapy be guided by clinical response rather than by an arbitrary treatment course.”
The petition, “End Preferential Treatment of the IDSA Guidelines for Lyme Disease,” claims that CDC’s preferential treatment harms thousands of chronically ill patients, who are frequently misdiagnosed and denied medically necessary treatment because of restrictions imposed by the IDSA guidelines. CDC’s failure to provide equivalent exposure for the ILADS guidelines compounds the harm by limiting access to information about evidence-based treatments that could help these severely ill patients recover from this devastating disease.
In an email response to the petition, Beth P. Bell, MD, Director of CDC’s National Center for Emerging and Zoonotic Infectious Diseases (NCEZID), declined to take action. Instead, she defended CDC’s preferential treatment, saying, “CDC believes that IDSA guidelines currently represent the best available synthesis of the medical literature on the diagnosis and treatment of Lyme disease.”
Allison Caruana of the Mayday Project, a Lyme patient advocacy group that collaborated on the petition, asks, “How can these guidelines represent the best available synthesis of the medical literature? The IDSA guidelines are nine years old and non-compliant with Institute of Medicine (IOM) standards and the GRADE system for rating evidence. On the other hand, the guidelines from ILADS were published in 2014, are compliant with the IOM standards and GRADE, and have been accepted and published by the National Guideline Clearinghouse.”
According to the petition, CDC’s preferential treatment of IDSA, which is a private organization, violates the Standards of Ethical Conduct for Employees of the Executive Branch, which states: “Employees shall act impartially and not give preferential treatment to any private organization or individual.”
Bruce Fries, a member of the Mayday Project and lead author of the petition says, “Even more troubling is that Dr. Bell, who endorses the preferential treatment of IDSA, is also a member of IDSA—a clear conflict of interest.” Fries added, “It is unacceptable that when a federal government agency is presented with evidence of improprieties, the official response is to confirm the improprieties and indicate they will continue.”
In response to the reply from CDC, signers of the petition are contacting their Congressional representatives and requesting assistance to compel CDC to end its preferential treatment of the IDSA guidelines for Lyme disease.
About the Mayday Project
The Mayday Project was formed by a group of volunteers who have been touched by Lyme disease. Mayday advocates for more accurate tests, better guidelines, improved access to treatment, improved education for physicians, and more funding for research. For more information, visit www.themaydayproject.org.
The Infectious Diseases Society of America Lyme guidelines: A Cautionary Tale about the Development of Clinical Practice Guidelines
Lyme Retreatment Guidance May be Flawed
Findings of Richard Blumenthal’s Anti-Trust Investigation of IDSA
Conflicts of Interest in Lyme Disease: Laboratory Testing, Vaccination and Treatment Guidelines
Severity of Chronic Lyme Disease Compared to Other Chronic Conditions: A Quality of Life Survey
- December 15, 2015 at 10:25 am
What can we do?
- December 15, 2015 at 9:34 pm
Who hires the CDC’s directors? It’s a government agency, it’s supposed to be responsive to the people not special interests. How can we get them fired?
I’ve been searching the internet for any information on the presidential candidates’ views on Lyme disease. Bernie Sanders did make the high price of Doxy an issue in his Senate campaign. Otherwise, there’s not much out there. Maybe lymedisease.org could do a Lyme voters’ guide.
- December 15, 2015 at 10:56 pm
It does exist and destroys people, wake up u quacks, people are suffering a real illness and you are denying them, that’s torture as far as I can see, get with the program Canada, the States recognise it, so are that not enough proof!!
- December 16, 2015 at 1:29 pm
Well, not sure why they think it’s a “no big deal” disease, maybe infect them with it, make them live with it for 5 yrs like I did before some is able to determine that it is lyme, by then they will know 100 percent that it is real, I can hardly walk, was unable to breath, was coughing up blood for a long time, misdiagnosed with cancer, copd, other interesting things only to have the no big deal disease of lyme. I used to work 16hr days almost every day, ran my own business that was very sussesful (2 million in my first 8 months) had to stop working, can hardly make a day, had to sell the company, all for this no big deal, oh forgot to mention, they thought I had MS as the last diagnosis. ….
- December 19, 2015 at 9:01 pm
5 years is a long time. But how about 57 years. Just thinking you are just not as energetic as other people, so push, push, push, then it catches you, just like the guy who got bit by a tick. All the symptoms come on, no balance, burning, blood clots, no balance, can’t stand to be touched, swollen joints, thirst that won’t quit, no sleep at all, swollen joints everywhere, muscle twitching, can’t get up, can’t raise hands up to elbows, and that is just the beginning of the symptoms. Anger, hate, disgust, deserted, ignored, desperate, nothing can explain how a Lyme victim feels. But these guys with their big $$$$$$$$$$$$ salary do not care. They make no sense; they are criminals. It is a pure plan to euthanize the population, no matter how much suffering goes on to fulfill their plan. These people have to be energized by the devil himself, the author of suffering, like he brought on Job.
- April 6, 2017 at 9:03 am
What can we do to change the laws? Get lyme literate doctors covered by insurance? In the long run, not treating chronic lyme patients costs society hundreds of thousands more than appropriate treatment! Instead of working and paying taxes I am collecting SSDI! I’d rather be working!!!!!!!! This is insanity!
I desperately want to be proactive in the fight for chronic Lyme treatment. But I don’t know where and how to help.
- April 6, 2017 at 11:15 am
Helene, have you joined MyLymeData? Research is going to lead the way to better treatments, and one day a cure. Sign up for MyLymeData here: https://www.mylymedata.org/
- April 22, 2017 at 1:38 pm
This is sad that the enhanced & recent knowledge of Lyme Disease treatment begs for updated guidelines for the treatment of this disease. It can, and has taken years for patients with this disease to overcome it, if ever. The CDC must update their guidelines ASAP to help the millions who suffer the pain of it.
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