https://www.lymedisease.org/touchedbylyme-cdc-occur/ by Dorothy Kupcha Leland

TOUCHED BY LYME: Misinterpreting the word “occur” on the CDC website

I’ve long been exasperated by a particular sentence in the Lyme disease section of the CDC’s website:

“This disease does not occur nationwide.”

In a recent blog on the topic, I noted: “Even using the CDC’s own highly restrictive Lyme surveillance criteria, there are cases on the east coast, cases on the west coast, and cases in the middle. So, what about that scenario is NOT ‘nationwide’?”

This is much more than a question of semantics. The CDC position is often used to deny patients a diagnosis. (“Well, the CDC says Lyme is not found nationwide–actually only in certain states–so you couldn’t possibly have Lyme disease….”)

People outside those magic 14 states can have a devil of a time getting diagnosed and treated. They lose the opportunity for early treatment—which offers the best outcome—and may have trouble EVER getting what they need from their doctors.

Well, apparently “this disease does not occur nationwide” also rankled Lyme activist Bruce Fries of Maryland. And he did something about it. He filed a complaint via a formal administrative process with the CDC’s Office of the Associate Director for Science (OADS), Office of Science Quality.

Here’s the complaint he filed:

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INFORMATION QUALITY REQUEST FOR CORRECTION

Complainant
Bruce Fries, Patient Centered Care Advocacy Group

Pursuant to the HHS Guidelines for Ensuring and Maximizing the Quality, Objectivity, Utility, and Integrity of Information Disseminated to the Public, the Patient Centered Care Advocacy Group, a patient advocacy organization with members and supporters throughout the United States, makes the following request for correction of inaccurate information.

Information to be Corrected
The CDC website page for Lyme Disease Data and Statistics contains the following statement in the Fast Facts section:

“Lyme disease is the most commonly reported vector-borne illness in the United States. In 2015, it was the sixth most common Nationally Notifiable disease. However this disease does not occur nationwide and is concentrated heavily in the northeast and upper Midwest.”

The statement “this disease does not occur nationwide” is inaccurate.

According to CDC surveillance reports, Lyme disease has been reported in every U.S. state except Hawaii, and the black-legged tick that transmits Lyme disease has been found in 45 percent of U.S. counties.

Impact
In addition to being a violation of HHS guidelines for information quality, the statement that Lyme disease does not occur nationwide has potential to harm patients in states with low incidence rates who are misdiagnosed and denied treatment when doctors rule out Lyme disease because of inaccurate information from CDC that Lyme disease does not occur nationwide.

Recommended Action
To correct the inaccuracy delete the following sentence:

“However this disease does not occur nationwide and is concentrated heavily in the northeast and upper Midwest.”

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Lo and behold, Bruce actually got a response, and the offending sentence has been removed from the CDC website!

Dr. Lyle Petersen is director of the Division of Vector-Borne Diseases in the CDC’s National Center for Emerging and Zoonotic Infectious Diseases. He sent Bruce a letter, which said in part:

“We agree that the term ‘occur’ is subject to misinterpretation and that the sentence can be clarified.”

Really? What else might “occur” mean, other than…occur? I’d personally leave the word “occur” right where it is and change the words around it like this: “Although Lyme disease is concentrated heavily in the northeast and upper Midwest, it can occur nationwide.”

But the CDC chose its words differently. Here’s what the website says now:

The website’s amended text is marginally better, since it now allows the possibility of a few more states. But the information is still inaccurate. Take this sentence:

“Infected ticks can also be found …in some areas of Northern California, Oregon and Washington.”

Why just Northern California? According to the California Department of Public Health, infected ticks have also been found in central and southern parts of the state. So, why not just say “California”?

And what’s with this next sentence?

“Although Lyme disease cases are occasionally reported from most other states, this does NOT mean that infection was acquired in those states.”

Why is the CDC hellbent on minimizing this disease? As Lorraine Johnson pointed out in a recent Lyme Policy Wonk blog, other sources of information indicate much more exposure to infected ticks than the CDC is willing to admit. (please see link in comment section about the Canine Maps predicting LD better than the CDC)

Why? Why? Why?

Despite the imperfections of the new language on the website, Bruce Fries deserves kudos for using the administrative process to force the CDC to make some changes.

And the CDC deserves whatever the opposite of “kudos” is, for the unsatisfactory way they “fixed” this problem.

Stay tuned. It won’t be the end of the story.

Join LymeDisease.org
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org

**Comment**

This article is a perfect example of why all things related to Lyme/MSIDS has hardly budged in over 40 years.  When Polly Murray of Connecticut first noticed all the families around her were ill and reported it to the CDC who then identified a chunk of kids with “juvenile arthritis,” a disease primarily of the joints (rheumatology) and skin (dermatology) this narrative has been powerfully protected by the folks who came up with it in the first place – the very people with patents on the organism as well as test kits and other pharmaceuticals that also obtain hefty payments as “experts” for insurance companies who weigh in against patients who are trying to obtain health care coverage.  https://madisonarealymesupportgroup.com/2017/08/29/research-challenges-in-lyme-disease-contagion-live/  (See comment at end of article for such shenanigans)  

All the research, led by the Lyme Cabal, has focused on this initial narrative that refuses to budge, allowing for different findings in the worldwide literature which has shown this disease to defy about everything they initially said about it.  https://madisonarealymesupportgroup.com/2017/01/13/lyme-science-owned-by-good-ol-boys/ , and now one pathologist is suing the CDC for their stranglehold on testing due to their own collusion:https://madisonarealymesupportgroup.com/2017/09/25/speaking-of-fake-science-fifty-seven-million-anti-trust-lawsuit-against-cdc-lyme-tests/

The CDC has controlled the narrative of Lyme/MSIDS like the iron curtain, and still doesn’t recognize Lyme/MSIDS in the South or California:  https://madisonarealymesupportgroup.com/2016/09/24/arkansas-kids-denied-lyme-treatment/https://madisonarealymesupportgroup.com/2017/08/07/california-lyme-cases-get-no-respect/

Going all the way back to the 80’s, here’s a story of one Southern doctor who fought the CDC narrative:  https://madisonarealymesupportgroup.com/2017/10/06/remembering-dr-masters-the-rebel-for-lyme-patients-who-took-on-the-cdc-single-handedly/

It’s taking scientists who have Lyme/MSIDS to come up with answers:  https://madisonarealymesupportgroup.com/2016/10/25/hope-for-southerners/

And if the CDC would ever get its head out of the sand, even Canine Maps predict LD better than the ancient and dusty CDC proclamation:  https://madisonarealymesupportgroup.com/2017/08/24/canine-maps-better-than-the-cdcs-in-predicting-lyme-disease/  Between 2011 and 2015, IDEXX collected nearly 12 million Lyme disease test results from US veterinarians on a county-by-county basis. The data indicates that Lyme disease is present in abundance in every state in the US.  The number of canine positive test reports is vastly greater than the number of human cases reported by the Centers for Disease Control (CDC). There are close to one million canine positive test results annually in the US, compared to 38,069 cases included in CDC surveillance reports.

The discrepancy between CDC and canine cases is even more pronounced in the western and southern states. In the West and the South, there are 104,104 cases in dogs annually, compared to 2,342 CDC-reported cases. In other words, there are roughly 50 times more canine cases than CDC surveillance cases.  

The following graphs from Lymedisease.org spell it out perfectly

LPW-canine-chart-2.png

Map-Canine-with-Circles.jpg

Michael Yabsley, a parasitologist at the University of Georgia, and Christopher McMahan, an assistant professor of mathematical sciences at Clemson University, have used the IDEXX canine data to develop a risk forecast map for the predicted Lyme disease prevalence — the percentage of dogs who are likely to test positive — by county in each of the 48 contiguous states. Yabsley explains the predictive relationship:

“Dogs really are the canary in the coal mine for human infection. Our research team has evidence that the relationship between canine disease and human disease is strong. Because dogs are being tested for exposure during annual exams, these data are available on a national scale, something that is difficult to get when studying the ticks and environment directly.”

Someone, please send the CDC a good dictionary so they can look up the word, “occur.”