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» LymeNet Flash » Questions and Discussion » Medical Questions » Citations for Underreporting- CDC

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Author Topic: Citations for Underreporting- CDC
Cheryl
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CDC Citations for the Underreporting of Lyme disease

Emerging Infectious Diseases, March-April 2000
"In North America, Lyme disease and endemic relapsing fever pose the greatest threat to human health and have received the most attention of the borrelial diseases. Approximately 14,000 cases of Lyme disease are reported in the United States each year; however, the actual number of cases may be 10-fold higher (2)."

MMWR January, 2002
"The findings in this report are subject to at least three limitations. First, because LD is reported through passive surveillance, LD is underreported, and the distribution and demographics of reported cases could be biased. Second, LD is underreported in areas where disease is endemic and might be overreported in areas where disease is nonendemic. Third, not all LD patients present with typical manifestations; other conditions might be confused with LD and laboratory testing might be inaccurate."

MMWR April, 2000
"As with a majority of diseases reported through a passive surveillance system, Lyme disease is underreported. Studies in Connecticut and Maryland estimated 7--12 unreported cases for each reported case (20,21). Additionally, the case definition has limitations of sensitivity and specificity."

CDC Website
"The overall incidence rate of reported cases in the U.S. is about 5 per 100,000 population, but there is considerable underreporting."

The public health impact of Lyme disease in Maryland
(Referenced in CDC publications)
"Results show that LD is underreported by 10- to 12-fold in Maryland,"

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Lyme Disease Information Online:
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New Yorkers, please see:
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TX Lyme Mom
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I think these links need to be in the archives or somewhere else so that they are readily available for easy referencing.

Or perhaps they are on your LymeInfo website already, huh? (Sorry, but I have trouble keeping up with all the websites and other info out there myself.)


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lou
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Really good information to have. Especially when talking to the media, so they understand that they can't just quote the number of cases reported and assume that demonstrates the scope of the disease. Which they do all the time.
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troutscout
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This is fantastic stuff!!!!!

I am posting it on The Iowa Lyme Disease Assoc's Physicians Page.

Trout Scout


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Cheryl
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Up for FL Lymer!
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Cheryl
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up!

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New Yorkers, please sign up:
http://www.lymeinfo.net/newyork.html


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Kerryblue
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My Rheume where I got my first possitive test Elisa. Said when they tested further it was not possitive enough to report.


Even though I had a poss. test from another lab.

So, I know mine was never reported. I asked him why with the fact that he treated me 4 wk. doxy and other tests. Did not have a answer, except we are just experimenting with you, but since you got sick on doxy and you still are sick your problem is mostly fm.

I asked about my history of all the bites and then in hosp. with viral meningitis. Doe`s that make sense now. Since all the docs could not figure out why I had meningitis at my age and then was never well again? He just wanted to get rid of me then. He hates to get involved in anything, even SSD, he is noted for backing down as I fouund out later.


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Cheryl
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MMWR May, 2004
"Surveillance for LD is subject to several limitations. Studies from the early 1990s suggested that LD cases were underreported by six to 12-fold in some areas where LD is endemic (2,3); the current degree of underreporting for national data is unknown. In addition, differences in the demographics of reported cases among states with above- and below-average incidence suggest variation in diagnostic and reporting practices among states. Clinicians are reminded that the LD case definition was developed for surveillance purposes and might not be appropriate for clinical management of individual patients (1)."

From CDC Website: http://www.cdc.gov/mmwr/mmwr_wk.html

The MMWR weekly contains data on specific diseases as reported by state and territorial health departments and reports on infectious and chronic diseases, environmental hazards, natural or human-generated disasters, occupational diseases and injuries, and intentional and unintentional injuries. Also included are reports on topics of international interest and notices of events of interest to the public health community.


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Cheryl
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Email to me from the CDC, February 2002:

EXCERPT:

Thank you for your correspondence. Regarding your third question: (3) What percentage of Lyme patients who meet the "surveillance criteria" are not reported? What percentage of patients are not accounted for according to the criteria for surveillance?.

There are several issues here. Anecdotally the CDC has stated that perhaps only as many as one of every ten Lyme cases are reported. There may be many factors that contribute to this situation: Some people may never recognize their symptoms and do not seek medical attention, physicians may not recognize the disease in some persons or may not fulfill all reporting responsibilities, there may be cases not reported due to errors in the state reporting system. Finally, if people do not meet the surveillance criteria per se, but rather present with unidentified cases that do not meet all the criteria the physicians do not report them. Physicians do not report to the
state how many people partially meet the criteria, therefore there are not accurate numbers to know how many people are thus described -- i.e. there are no figures on how many others are seen in physician's practice who are NOT reported, nor how many people do not seek medical attention.


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Cheryl
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CDC Case Definition- NOT to be used for diagnosis or management of Lyme patients!

Email to me from the CDC, July 1999:

"Per your inquiry, CDC has no specific program dealing with "chronic" Lyme disease. CDC Lyme disease program focuses on the surveillance, epidemiology, prevention and control of Lyme disease, and does not have a treatment protocol or guidelines on management of LD patients."

From the CDC case definition:
http://www.cdc.gov/mmwr/preview/mmwrhtml/00047449.htm

"This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis."


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levity101
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Cheryl,
Thanks for bringing up all this really important info....making a copy for my files.
~Nancy

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Thomas Parkman
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Would somebody be so kind as to explain to me just what is the use or the purpose of the CDC. First they set up criteria for 'surveillance' purposes which by their own admission do not catch or define the overwhelming majority of cases. If their definitions cannot be used for diagnostic purposes what are they for?
Even nuttier they admit the disease is 'underreported' by as many as ten to twelve times the actual number of diseases. Thus the CDC does not have a clue as to the actual extent of the epidemic, does not have a definintion or tests that can accurately define the disease and does not even begin to suggest a protocol to cure or to prevent it. As for a vaccine or some theraputic approach, they do not have a clue. So may I suggest that what is needed is to get rid of the CDC. What use are they anyway, except to give a bunch of useless bureaucrats some well paying and plush and useless jobs. Cheers.

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minoucat
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Thomas, on account of as how I cannot compete with the beauty of your prose, I have 3 words for you:

Health Insurance Companies


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lou
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In an epidemiology textbook I saw, it said that the purpose of disease surveillance was to track trends, not establish the exact number of cases.

It said that public health hospitals were more likely to report cases than private physicians, and that it was common to have diseases be greatly underreported. So this seems to be part of the system, not a plot against Lymies, although it certainly does work against us.


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Lymelighter
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What about Citations for the Undertreatment of Lyme disease?
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Cheryl
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Now at: http://www.lymeinfo.net/cdccitations.html
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Cheryl
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BUMP
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Monica
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Thank you for posting this!
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Tincup
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Not only excellent information.. as usual.. but perfect timing too!

I think she can read my mind!


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Cheryl
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Thanks! Now you've got me wondering what you have up your sleeve!

quote:
Originally posted by Tincup:
Not only excellent information.. as usual.. but perfect timing too!

I think she can read my mind!



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Cheryl
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BUMP

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tjtighe
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Thanks so much, Cheryl. Great info to have.

I know I've said it before but Minoucat's 3 words are it. Remember, there are more ins. lobbyists in D.C. than there are congresspeople. So guess who loses!

tj

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tj

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nannie
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UP!

Do you have exact source references for each reference. These citations would be excellent in combo with Pub Law to establish:
1. treatment needs to be based on medical evidence.
2. The 'scientific' evidence states that there is significant underreporting.
3. The citations are evidence that diagnostic medical testing and testing protocols specific to Lyme are not accurate.

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pq
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Thanx Cheryl
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Cheryl
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quote:
Originally posted by nannie:
UP!

Do you have exact source references for each reference.

Hi,

Yup. Just click on each one for the source.

[Smile]
Cheryl

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Kara Tyson
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Thomas,

good point. Who know what they are for.

You would think in New Orleans with the potential for disease they would be making statements. Hear any?? Not me.

[bonk]

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Kara Tyson
Lyme Disease Support Group Of Alabama--MobileChapter

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treepatrol
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bump

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Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

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