The Centers for Disease and Control Prevention (CDC) group in charge of policy for Lyme disease violates federal law by participating in clandestine advisory meetings with the Infectious Diseases Society of America (IDSA) says a group of patient advocates who collaborated on a petition calling on CDC to End Preferential Treatment of the IDSA Guidelines for Lyme Disease.
The petitioners claim that “because of restrictions imposed by the critically flawed IDSA guidelines, which are endorsed and promoted by CDC, thousands of chronically ill patients are harmed by misdiagnosis and denial of medically necessary treatment.” According to a Johns Hopkins study, these poor outcomes cost the U.S. healthcare system $1.3 billion annually. Patient out-of-pocket expenses and burdens to Medicare and Medicaid cost our economy billions more.
The petition documents what advocates claim are serious, long running violations of federal law by officials responsible for CDC’s Lyme disease program.
According to the petition, the Ad Hoc International Lyme Disease Group (Ad Hoc Group) was formed in 2005 by CDC and NIH employees and authors of the IDSA guidelines. Emails released in response to a Freedom of Information Act (FOIA) request by science writer Kris Newby for the award winning documentary Under Our Skin, show that CDC has allowed the Ad Hoc Group to illegally determine federal policy on Lyme disease for the past decade.
According to Congressional testimony by Lorraine Johnson, CEO of LymeDisease.org, who reviewed the emails, the Ad Hoc Group “composed of members of the Infectious Diseases Society of America (IDSA), a medical specialty society, along with members of the Centers for Disease Control & Prevention (CDC) and the National Institutes of Health (NIH), has been acting in violation of fundamental principles of ethics. This group has been covertly setting government Lyme policy, intentionally excluding other stakeholders, running afoul of government open meeting standards, and deliberately subordinating the public interests to those of a private medical society.”
CDC emails show that a clandestine conference of the Ad Hoc Group was held in May 2005 at Westchester County Medical Center in Valhalla, NY. Attendees included CDC employees Barbara Johnson and Paul Mead, Susan O’Connell of Britain’s National Health Service, and IDSA guidelines panelists Mario Aguero-Rosenfeld, Paul Auwaerter, Johan Bakken, Linda Bockenstedt, Raymond Dattwyler, Stephen Dumler, Durland Fish, John Halperin, Mark Kempler, Peter Krause, Robert Nadelman, Eugene Shapiro, Sunil Sood, Gerold Stanek, Allen Steere, and Franc Strle.
According to Johnson, “No public notice was given and the meeting was clandestine. The participant list for the meeting, chaired by Dr. Wormser included principally IDSA researchers and CDC employees…” the Ad Hoc Group, “which subsequently added two members of the NIH, Drs. Phil Baker and Ed McSweegan, to its membership ranks, proceeded to work on IDSA projects and government policy projects regarding Lyme disease.”
Participation of CDC and NIH employees in clandestine advisory committee meetings violates The Federal Advisory Committee Act, which says “Each advisory committee meeting shall be open to the public,” and “records, transcripts, minutes, appendixes, working paper, drafts, studies, agenda, of other documents shall be available for public inspection.”
The FOIA request period ended in 2007. Other than documents obtained via FOIA, no records have been made available for public inspection. Petitioners believe the Ad Hoc Group has continued to set Lyme-related government policy without oversight. They call for the immediate release of all records related to Ad Hoc Group meetings attended by CDC or NIH employees.
Why is the CDC Allowing a Private Group to Determine Federal Policy on Lyme Disease?
Petition to CDC: End Preferential Treatment of the IDSA Guidelines for Lyme Disease
18 thoughts on “Lyme advocates petition CDC to end preferential treatment of the IDSA guidelines for Lyme disease”
More evidence that “chronic Lyme disease” is a crank diagnosis — now its “advocates” are literally promoting a conspiracy theory. The scientific view is well-described on Wikipedia.
Mark, and you know this how? Because Wikipedia says so? Do you have any first-hand knowledge about this disease?
Wikipedia’s Lyme disease entries, including chronic Lyme and ILADS, are controlled by a small group of individuals who have been assigned authority by Wikipedia to censor the pages of revisions. That may sound wild, but all one needs do is check the revisions and talk pages. A person who calls himself jytdog who discloses on his own page that he works for a company that produces medications for neurological diseases (and therefore would benefit from untreated Lyme disease symptoms) deletes any and all updates to the Lyme related pages that don’t support the IDSA case. There’s also an internet troll who goes by various names and who runs a facebook page called “chronic Lyme and Morgellons imagination station” entirely dedicated to monitoring these stories and reader comments and saying that those who suffer from chronic Lyme symptoms are “antiscience.” It’s so prevalent that it’s easy to spot, and the same person or small group of people when pressed always refer back to one of a few papers authored by Gary Wormser or Paul Auwaerter. In the huge sea of existing peer-reviewed research, this person/these people to whose group “Mark Thorson” obviously belongs” can only source a few academic journal papers by these two authors–and those papers are argumentative, not the results of scientific investigations. If you go to the Wikipedia page that “Mark Thorson” linked, note the references to the IDSA, Wormser and Auwaerter. The second sentence of the Wikipedia article itself is both biased and incorrect by exclusion: “There is no clinical evidence that “chronic” lyme disease is caused by a persistent infection.” There are over 700 published peer-reviewed papers that observe and describe persisting Lyme disease bacteria in vitro–in a petri dish in a lab setting–that withstand typical antibiotic treatment. Because this has only been observed outside of the body, it is half correct to state that there’s no documented evidence of Lyme bacteria persisting in the human body after antibiotic treatment–but there’s also no evidence that it does not persist. Ongoing and intensifying symptoms suggest that it does. Laboratory tests for Lyme are so poor that they cannot conclude that there is no present infection in the body.
If nothing else, the very sloppiness of the Wikipedia article, which refers to “lyme” with a small L, illustrates a lack of attention to the content and a lack of proper editorial oversight.
Note the “talk” tab of the Wikipedia article and any reader will see that the contents of the page have been challenged by many people who oftentimes make strong cases supported by evidence–and yet one single Wikipedia editor who goes by the handle jytdog commandeers all of the contents of both the “Lyme Disease Controversy” page and the ILADS page. He has a clearly stated conflict of interest, and the Wikimedia organization has refused to address this user’s total control over these pages.
Jytdog’s user page: https://en.wikipedia.org/wiki/User:Jytdog#How_I_try_to_help_manage_COI_in_WP
Jytdog’s stated conflict of interest from his userpage: I work for a startup company developing drugs for acute neurological disorders (not psychiatric, and not chronic, and CNS not PNS). We have no partnerships with any other drug companies. There is no article about our company in WP and I will not create an article about the company, nor edit it if someone else creates it, nor edit about drugs that exist or are in development for acute neurological disorders. To be conservative, I will not edit articles about acute neurological disorders themselves. I will not disclose the name of the company nor other specifics as the company is small and the disclosure would OUT me. Instead I am defining a fence around the area where my COI actually exists. Happy to discuss on my Talk page.
Anyone who knows anything about progressive/late-stage Lyme disease or persisting/chronic Lyme disease knows that it generally manifests as a systemic neurological disease. Jytdog, who controls all the Lyme disease Wikipedia pages–almost always citing Gary Wormser’s research, strongly suggesting either that he is Wormser (who used to edit these pages and no longer does) or that he has a close affiliation with him–has stated that he financially benefits from medications to treat neurological disorders. He has stated that he will not edit articles that relate to neurological diseases. He controls several Lyme disease articles, based upon his personal bias and select research that supports his opinion and calls his opinion “scientific consensus” (wrongly). Untreated Lyme disease, which he advocates to the public via his editing of Wikipedia articles, results in neurological problems that often are misdiagnosed as fibromyalgia, chronic fatigue syndrome, multiple sclerosis and others, and for which physicians prescribe neurological medications–such as those from which Jytdog profits.
None of this is complicated. Unfortunately, Jytdog, Wormser and any other aliases or members of their IDSA-affiliated cohort, are condemning very ill people not only to a lack of access to treatment, but to even reading sound information about persisting Lyme disease. This should be a criminal act, but unfortunately they are free to do this and for whatever reason Wikipedia supports the effort, either intentionally or passively by refusing to intervene.
Well Mark Thorson, would you be willing to let an infected tick stay on you long enough to transmit the bacteria, then wait at least 3 months before taking antibiotics? You try that, and if you feel you have been cured after that THEN you may spout out your opinion about the nonexistence of chronic Lyme disease. Until then please keep your mouth shut about something you know NOTHING about! Your ignorance is such a slap in the face to those who have to deal with the physical manifestations of this EVERY day!
Mr. Thorson, I can only assume you are deliberately being facetious by citing Wikipedia as a reliable source for scientific information. The validity of the research that supports the existence of Chronic Lyme disease is demonstrated by the recent acceptance of new treatment guidelines for Lyme disease and other tick-borne diseases by the National Guideline Clearinghouse, a branch of the U.S. Department of Health and Human Services. The new guidelines can be found at http://www.guideline.gov/content.aspx?id=49320&search=lyme.
Wikipedia cites their sources of information, in this case papers in respectable medical journals (New England Journal of Medicine, BMJ, etc.) — not any pay-to-play Egyptian medical journal. Anyone who has credible information from a reliable source can change Wikipedia, if Wikipedia is in error. And if you try to post unfounded assertions of belief rather than science-based facts, expect someone to change it back.
The guidelines you linked to come from ILADS, an “advocacy” organization which assumes from the start “chronic Lyme disease” is a real disease. The large number of studies and meta-analyses the authors rejected for reaching their conclusions suggests they were cherry-picking their data. Even they admit in their guidelines that every single one of their recommendations is based on “very low quality evidence”.
so I guess what your suggesting is that ILADS and all their researches not to mention others around the world , all their findings are bogus? but the CDC and IDSA are right? well then what about all the people who have had multipule rounds of heavy antibiotics but its been proven with antibody and PCR test that they still have it? Im one of those people and still sick. what about the studies on mice showing the germ persists? the facts that its been proven to be found in cartilage where antibiotics cant reach it? do the CDC or IDSA deny this fact? perhaps if you are so sure there is no chronic Lyme you should join one of these teams of researchers, or better yet perhaps experiment on yourself with the disease and find out the truth. come to NJ , there are plenty of ticks here ready and waiting.
Getting information about Lyme from ILADS is like getting information about Scientology from the Church of Scientology — you can’t expect unbiased or objective information from them. They’ve been in business for 16 years, and the “chronic Lyme disease” hypothesis is older than that. That’s plenty of time for studies to conclusively demonstrate long-term lingering infection and get it published in reputable journals. Why hasn’t that happened?
When you said: you cannot get an unbiased or objective opinion, you were absolutely right!! Except this ACTUALLY applies to panel members who make up those guidelines because the majority of them have financial interests in promoting these guidelines. DO YOUR HOMEWORK! For those of us who have spent 100,000 or more battling this disease it is sickening to think that these corrupt doctors are willing to sell their souls to the devil for money
This is the typical reply of someone involved in an unscientific health cult — accuse those advocating science-based treatment of having “financial interests”. Both the medical establishment and the pharmaceutical companies would benefit from long-term antibiotic treatment of people with imagined Lyme disease, but that’s not how either makes their money. They make their money by offering effective treatments based on scientific medicine, not quackery. The ones who really profit from the misdiagnosis of “chronic Lyme disease” are chiropractors, naturopaths, and fringe MD’s offering bogus treatments.
For your information, The new England Journal Of Medicine has close ties with the IDSA. Of course they are going to promote whatever the IDSA says is true. Do your homework!
You forgot to mention the Freemasons and the Illuminati. It’s all the same conspiracy, you know.
I normally do not pray for illness upon another. But I feel the only way the CDC or the IDSA will begin to see what chronic Lyme or as you all call it post Lyme disease does to someone is to experience it. I have seen first hand what this disease and its coninfections do. I worked for a Lyme disease specialist and have had a
Friend die and also have a sister in law fighting for her life for the past 3 years. This disease has cost her family well over 45,000 dollars and the worst part is she has lost years she will never get back. Shame on you for using the words CRANK DIAGNOSIS. When you say this you insult everyone fighting with this illness. I pray you or a loved one experiences the pain, the seizures, brain fog, heart complications and the worst is the IGNORANCE OF ANOTHER HUMAN BEING !!!
You all need to get your heads out of your asses. This disease is killing us!!
Lisa Ann Cote
I read it on the internet so it’s true. This is on the internet so it’s true: mark Thornton is a complete tit.
Are you drunk or just stupid?