To all who have signed this petition, Your assistance is requested. Per the email thread below, there has been no response from Ruth Jajosky of the CDC regarding the missing statement on the latest CDC 2017 Case Definition website. Missing statement: “This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis” On behalf of all Lyme patients around the globe, please feel free to contact Dr. Jajosky and request an update to their website. Contact info: Ruth Jajosky, DMD, MPH Phone: 404.498.6274 Fax: 404.498.6235 Internet e-mail raj3@cdc.gov Cc: Aaron Aranas, EPIDEMIOLOGIST ata0@cdc.gov -Carl Tuttle Hudson, NH Correspondence with the CDC: ________________________________________ From: "Carl Tuttle" To: raj3@cdc.gov Cc: ata0@cdc.gov, soib@cdc.gov Sent: Friday, January 13, 2017 7:21:47 AM Subject: Re: Case Definitions for Infectious Diseases Web Site (Second Request) Third request.... Please respond to this inquiry. -Carl Tuttle ________________________________________ From: "Carl Tuttle" To: raj3@cdc.gov Cc: ata0@cdc.gov, soib@cdc.gov Sent: Monday, January 9, 2017 7:50:40 AM Subject: Re: Case Definitions for Infectious Diseases Web Site (Second Request) Second request. -Carl Tuttle ________________________________________ From: "Carl Tuttle" To: raj3@cdc.gov Cc: ata0@cdc.gov, soib@cdc.gov Sent: Thursday, December 22, 2016 12:52:23 PM Subject: Case Definitions for Infectious Diseases Web Site Dec 22, 2016 Centers for Disease Control and Prevention Division of Notifiable Diseases and Healthcare Information 1600 Clifton Road Atlanta, Georgia 30333 RE: Noncompliance with Federal Public Law 107-116 Attn: Ruth Jajosky, DMD, MPH Dear Dr. Jajosky, In 2011 I sent you an email (see below) referencing the Lyme disease case definition. Once again we have an issue with the CDC’s 2017 Case Definition for Lyme disease website as it is missing the following statement: https://wwwn.cdc.gov/nndss/conditions/lyme-disease/case-definition/2017/ “This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis” Federal Public Law 107-116 passed by the Senate and House and signed by President Bush on January 10, 2002; Wording on that bill states that the CDC's case surveillance definition is "misused as a standard of care for healthcare reimbursement, product (test) development, medical licensing hearings, and other legal cases." It also instructs the CDC to correct this misuse. Why is the disclaimer missing in the latest case definition? Sincerely, Carl Tuttle Hudson, NH 2011 Email sent to the CDC: ___________________________________________________________ ----- Original Message ----- From: Carl Tuttle To: soib@cdc.gov Sent: Fri, 17 Jun 2011 15:34:05 -0000 (UTC) Subject: Case Definitions for Infectious Diseases Web Site Centers for Disease Control and Prevention Division of Notifiable Diseases and Healthcare Information 1600 Clifton Road Atlanta, Georgia 30333 RE: Noncompliance with Federal Public Law 107-116 The 2011 Case Definition for Lyme disease website is missing the following statement: This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis The above statement was posted on the 2008 Case definition page but is now missing in the latest Case Definition, why is that? Federal Public Law 107-116 passed by the Senate and House and signed by President Bush on January 10, 2002. Wording on that bill states that the CDC's case surveillance definition is "misused as a standard of care for healthcare reimbursement, product (test) development, medical licensing hearings, and other legal cases." It also instructs the CDC to correct this misuse. Can you please explain why the disclaimer is missing in the latest case definition and why the CDC has chosen to be noncompliant with Federal Public Law 107-116? Carl Tuttle Hudson, NH 03051 2011 Response from Ruth Jajosky, DMD, MPH: ______________________________________________________ ----- Forwarded Message ----- From: Ruth Ann Jajosky (CDC/OSELS/PHSPO) To: Carl Tuttle , NNDSS MMWR Prod/SOIB (CDC) Cc: Aaron Aranas (CDC/OSELS/PHSPO) Sent: Mon, 08 Aug 2011 17:09:23 -0000 (UTC) Subject: RE: Case Definitions for Infectious Diseases Web Site (Third Request) Mr. Tuttle, You should now be able to see the following statement posted on the 2011 Lyme disease case definition web site at http://www.cdc.gov/osels/ph_surveillance/nndss/casedef/lyme_disease_current.htm “This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis.” Regards, Ruth Jajosky, DMD, MPH