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 14 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 hell-bent 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.
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. This won’t be the end of the story.
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
To my friend Bruce, well done as usual with the facts and links to back up anything you say.
It was great seeing and talking with you again at the LYME DISEASE conference in Philadelphia. Keep up the good work Ion behalf of all of us.
Your dedication on behalf of yourself and us can never be repaid to this farmer turned politician.
I can still see you behind the pulpit in the Senate building where you and I each got our pictures to show we were there after you delivered letters to many of the senators offices in 2016. Someday you will be talking there in front of a full house instead of the empty room we had that day. LOL
Iowa friend, Betty Gordon
I am disgusted with ALL the “tickpicking” of definitions of words and how we are suffering from this nonsense. I am surprised we who are suffering from this insidious disease are not demonstrating in the streets. We should be “psycho dialing” the offices of all our elected officials demanding our human rights and the same health care and treatments they and their families are afforded with our tax dollars! If THEY and THEIR families were treated the way we are being treated, I guarantee all this nonsense “tickpicking” would be gone! All this “tickpicking” is a waste of time and brain power! Most of us don’t have much left!
Thank you Bruce for working so hard for us. I hope everyone remembers your hard work when it comes time to vote. I hope everyone also remembers an empty senate hall!
The CDC knows that Lyme et al is everywhere. They’re just arrogant, and have money to lose if they admit that these infections are world-wide. You would have to have an I.Q. of less than 60 to not know that the transporters of these ticks, which includes occupants of motor vehicles of every kind, carry the little critters around the planet.
Thank you, Bruce Fries. My brain is too damaged by Lyme to write so well.
Various California Vector Control agencies have collected infected ticks along the coast in Los Angeles, Orange, and San Diego counties, yet I was denied a diagnosis of Lyme while actively showing 6 bullseye rashes! The CDC standards say a bullseye rash in an area with confirmed Borellia is a confirmed, and reportable, case of Lyme. As long as doctors fail to follow the standards, as long as the presence of Borellia is denied or even down played, there will be grossly inaccurate records for the incidence of Lyme Disease here in California, North, South, East, and West. And, as much as I believe California is outstanding in most ways, it is hard to believe that other states’ statistics are not similarly skewed. Because ‘it isn’t here’ doctors will continue to fail, or even refuse, to report that IT IS HERE! It is a self fulfilling ‘prophesy’.
Why would the CDC misrepresent where Lyme disease occurs? The species/strains in other locales may be too heterogenous compared to strain B31 used in all experimental Lyme disease vaccine models (including dog vaccine models), and also these species/strains may have been poorly characterized, or not characterized at all, but just sitting in some scientists’ freezer. B31 is said to be “the” strain/species that occurs in the U.S. If you look at patents on Lyme disease vaccines listed at the US Patent & Trademark Office, B31 is the strain of Borrelia burgdorferi designated to be used. Note, also, that there is a LIMIT as to how many proteins you can pack into a bioengineered vaccine. So, should other strains/species be recognized as causing significant disease in the U.S., it interferes with their specious Lyme vaccine projects.
Thanks for your column!
I contracted the disease in California but now live in New Mexico. Does this mean I no longer have Chronic Lyme Disease? Ridiculous!
I prayed for Bruce Fries when I read this. Thank you, Bruce.