CDC admits SOME truth.
This is an article from lymedisease.org
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LDo’s VP for Education and Outreach. Contact her at [email protected].
"The CDC upped its official count of Lyme disease cases in the US to 300,000, ten times the previous number.
Something that’s always been a thorn in the sides of Lyme patients and the people who love them is the CDC’s screwy way of counting Lyme disease cases. Or should I say undercounting? Because the CDC has for years used such a rigidly narrow standard of what is permitted to be officially reported as Lyme disease, untold thousands (tens of thousands? maybe hundreds of thousands?) of cases are routinely kicked out of system, never to be heard from again.
(Just one example: New York state’s mid-Hudson Valley has one of the highest rates of Lyme disease in the whole darn country. But because local health officials don’t have the money to perform the CDC’s required system of validating Lyme cases, they estimate the numbers. Which the CDC won’t accept. So, those numbers show up–nowhere.)
So you think we’d be happy that the CDC issued a press release today saying that instead of 30,000 cases a year that they’ve been reporting all along, they think the number is more like 300,000. (“Happy” is too strong a word for my own state of mind about this. “Guarded” “questioning” and “hmm, wonder what they’re really up to” is a more accurate description of what I’m feeling.)
I participated in a phone call with Dr. C. Ben Beard of the CDC about an hour ago. We all had lots of questions. Basically, Dr. Beard summarized what’s in the press release, and told us more information would be available later. Here are questions I raised that I still think need answering by the CDC:
The new number supposedly came about because of three different studies: in one, the CDC looked at insurance company data for the number of people who have been diagnosed and treated for Lyme disease. My reply: Many people with Lyme don’t get diagnosed properly in the first place, and the insurance company won’t pay for treatment. So huge numbers of cases don’t show up here.
Second study: the CDC looked at data from certain laboratories, and counted how many positive Lyme tests. (Igenex wasn’t included. Need I say more?)
Third study: self-reported data from an admittedly small sample of people who said they had been DIAGNOSED with Lyme disease. (same complaints as study #1, along with many other questions about sampling techniques.)
It will take us all a while to process this information, look at the information they send us, and figure out what it really means. But here’s something to chew on: if the above referenced studies (with their huge deficits) could encourage the CDC to increase the number by a factor of 10, how many annual cases of Lyme do you think there REALLY are in the US? A million? Two million?
And since the IDSA Lyme guidelines (endorsed by the CDC) restrict treatment for Lyme patients, many of those people are still ill years later. How many millions of sick people are we really talking about?
Food for thought."
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LDo’s VP for Education and Outreach. Contact her at [email protected].
- See more at: http://lymedisease.org/news/touchedbylyme/cdc-figures.html#sthash.bsA1LthS.dpuf
SO here is the actual press release by the cdc from www.cdc.gov
Press ReleaseFor Immediate Release: Monday, August 19, 2013
Contact: Media Relations
(404) 639-3286
CDC provides estimate of Americans diagnosed with Lyme disease each yearPreliminary estimates released by the Centers for Disease Control and Prevention indicate that the number of Americans diagnosed with Lyme disease each year is around 300,000. The preliminary estimates were presented Sunday night in Boston at the 2013 International Conference on Lyme Borreliosis and Other Tick-Borne Diseases.
This early estimate is based on findings from three ongoing CDC studies that use different methods, but all aim to define the approximate number of people diagnosed with Lyme disease each year. The first project analyzes medical claims information for approximately 22 million insured people annually for six years, the second project is based on a survey of clinical laboratories and the third project analyzes self-reported Lyme disease cases from a survey of the general public.
Each year, more than 30,000 cases of Lyme disease are reported to CDC, making it the most commonly reported tick-borne illness in the United States. The new estimate suggests that the total number of people diagnosed with Lyme disease is roughly 10 times higher than the yearly reported number. This new estimate supports studies published in the 1990s indicating that the true number of cases is between 3- and 12-fold higher than the number of reported cases.
“We know that routine surveillance only gives us part of the picture, and that the true number of illnesses is much greater,” said Paul Mead, M.D., M.P.H, chief of epidemiology and surveillance for CDC’s Lyme disease program. “This new preliminary estimate confirms that Lyme disease is a tremendous public health problem in the United States, and clearly highlights the urgent need for prevention.”
CDC continues to analyze the data in the three studies to refine the estimates and better understand the overall burden of Lyme disease in the United States and will publish finalized estimates when the studies are complete. Efforts are also underway at CDC and by other researchers to identify novel methods to kill ticks and prevent illness in people.
“We know people can prevent tick bites through steps like using repellents and tick checks. Although these measures are effective, they aren’t fail-proof and people don’t always use them,” said Lyle R. Petersen, M.D., M.P.H, director of CDC’s Division of Vector-Borne Diseases. “We need to move to a broader approach to tick reduction, involving entire communities, to combat this public health problem.”
This community approach would involve homeowners trying to kill ticks in their own yards, and communities addressing a variety of issues. These issues include rodents that carry the Lyme disease bacteria, deer that play a key role in the ticks’ lifecycle, suburban planning, and the interaction between deer, rodents, ticks, and humans. All must be addressed to effectively fight Lyme disease.
Most Lyme disease cases reported to CDC through national surveillance are concentrated heavily in the Northeast and upper Midwest, with 96 percent of cases in 13 states. Lyme disease is caused by the bacterium Borrelia burgdorferi and is transmitted to humans through the bite of infected blacklegged ticks. Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart, and the nervous system.
CDC recommends people take steps to help prevent Lyme disease and other tickborne diseases:
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LDo’s VP for Education and Outreach. Contact her at [email protected].
"The CDC upped its official count of Lyme disease cases in the US to 300,000, ten times the previous number.
Something that’s always been a thorn in the sides of Lyme patients and the people who love them is the CDC’s screwy way of counting Lyme disease cases. Or should I say undercounting? Because the CDC has for years used such a rigidly narrow standard of what is permitted to be officially reported as Lyme disease, untold thousands (tens of thousands? maybe hundreds of thousands?) of cases are routinely kicked out of system, never to be heard from again.
(Just one example: New York state’s mid-Hudson Valley has one of the highest rates of Lyme disease in the whole darn country. But because local health officials don’t have the money to perform the CDC’s required system of validating Lyme cases, they estimate the numbers. Which the CDC won’t accept. So, those numbers show up–nowhere.)
So you think we’d be happy that the CDC issued a press release today saying that instead of 30,000 cases a year that they’ve been reporting all along, they think the number is more like 300,000. (“Happy” is too strong a word for my own state of mind about this. “Guarded” “questioning” and “hmm, wonder what they’re really up to” is a more accurate description of what I’m feeling.)
I participated in a phone call with Dr. C. Ben Beard of the CDC about an hour ago. We all had lots of questions. Basically, Dr. Beard summarized what’s in the press release, and told us more information would be available later. Here are questions I raised that I still think need answering by the CDC:
The new number supposedly came about because of three different studies: in one, the CDC looked at insurance company data for the number of people who have been diagnosed and treated for Lyme disease. My reply: Many people with Lyme don’t get diagnosed properly in the first place, and the insurance company won’t pay for treatment. So huge numbers of cases don’t show up here.
Second study: the CDC looked at data from certain laboratories, and counted how many positive Lyme tests. (Igenex wasn’t included. Need I say more?)
Third study: self-reported data from an admittedly small sample of people who said they had been DIAGNOSED with Lyme disease. (same complaints as study #1, along with many other questions about sampling techniques.)
It will take us all a while to process this information, look at the information they send us, and figure out what it really means. But here’s something to chew on: if the above referenced studies (with their huge deficits) could encourage the CDC to increase the number by a factor of 10, how many annual cases of Lyme do you think there REALLY are in the US? A million? Two million?
And since the IDSA Lyme guidelines (endorsed by the CDC) restrict treatment for Lyme patients, many of those people are still ill years later. How many millions of sick people are we really talking about?
Food for thought."
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LDo’s VP for Education and Outreach. Contact her at [email protected].
- See more at: http://lymedisease.org/news/touchedbylyme/cdc-figures.html#sthash.bsA1LthS.dpuf
SO here is the actual press release by the cdc from www.cdc.gov
Press ReleaseFor Immediate Release: Monday, August 19, 2013
Contact: Media Relations
(404) 639-3286
CDC provides estimate of Americans diagnosed with Lyme disease each yearPreliminary estimates released by the Centers for Disease Control and Prevention indicate that the number of Americans diagnosed with Lyme disease each year is around 300,000. The preliminary estimates were presented Sunday night in Boston at the 2013 International Conference on Lyme Borreliosis and Other Tick-Borne Diseases.
This early estimate is based on findings from three ongoing CDC studies that use different methods, but all aim to define the approximate number of people diagnosed with Lyme disease each year. The first project analyzes medical claims information for approximately 22 million insured people annually for six years, the second project is based on a survey of clinical laboratories and the third project analyzes self-reported Lyme disease cases from a survey of the general public.
Each year, more than 30,000 cases of Lyme disease are reported to CDC, making it the most commonly reported tick-borne illness in the United States. The new estimate suggests that the total number of people diagnosed with Lyme disease is roughly 10 times higher than the yearly reported number. This new estimate supports studies published in the 1990s indicating that the true number of cases is between 3- and 12-fold higher than the number of reported cases.
“We know that routine surveillance only gives us part of the picture, and that the true number of illnesses is much greater,” said Paul Mead, M.D., M.P.H, chief of epidemiology and surveillance for CDC’s Lyme disease program. “This new preliminary estimate confirms that Lyme disease is a tremendous public health problem in the United States, and clearly highlights the urgent need for prevention.”
CDC continues to analyze the data in the three studies to refine the estimates and better understand the overall burden of Lyme disease in the United States and will publish finalized estimates when the studies are complete. Efforts are also underway at CDC and by other researchers to identify novel methods to kill ticks and prevent illness in people.
“We know people can prevent tick bites through steps like using repellents and tick checks. Although these measures are effective, they aren’t fail-proof and people don’t always use them,” said Lyle R. Petersen, M.D., M.P.H, director of CDC’s Division of Vector-Borne Diseases. “We need to move to a broader approach to tick reduction, involving entire communities, to combat this public health problem.”
This community approach would involve homeowners trying to kill ticks in their own yards, and communities addressing a variety of issues. These issues include rodents that carry the Lyme disease bacteria, deer that play a key role in the ticks’ lifecycle, suburban planning, and the interaction between deer, rodents, ticks, and humans. All must be addressed to effectively fight Lyme disease.
Most Lyme disease cases reported to CDC through national surveillance are concentrated heavily in the Northeast and upper Midwest, with 96 percent of cases in 13 states. Lyme disease is caused by the bacterium Borrelia burgdorferi and is transmitted to humans through the bite of infected blacklegged ticks. Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart, and the nervous system.
CDC recommends people take steps to help prevent Lyme disease and other tickborne diseases:
- Wear repellent
- Check for ticks daily
- Shower soon after being outdoors
- Call your doctor if you get a fever or rash