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According to HHS staff, the Tick-Borne Disease Working Group (TBDWG) is scheduled to discuss and vote on a chronic designation for the 2020 report to the HHS Secretary and Congress at the upcoming meeting on November 17, 2020.

 It is critical that we, as advocates in support of a chronic designation, provide written comments to the TBDWG as it prepares to vote on this critical matter. Your written comments will not only provide scientific evidence of the chronic impact of Lyme disease, but also allow for you to share your personal story.  

Make Your Voice Count

 It is important that your comments reflect the need for a chronic designation by the TBDWG. Listed below are a few key talking points that can be included in your written comments that advocate for a vote in favor of the designation:

  • People are sick. And, they deserve better. The stigma, doctor ignorance and public shaming that surrounds this disease needs to be rectified.
  • A chronic-Lyme designation would ensure that countless Americans are provided proper diagnosis and treatment of this disease. 
  • We are seeking access to accurate testing, insurance coverage for this disease, employers recognizing that this is real. 
  • We ask the TBDWG recognize and recommend a chronic designation of Lyme disease. 

Comments can be submitted via this link or by directly sending to tickbornedisease@hhs.gov. It is important that your comments reflect the need for a chronic designation by the TBDWG. 

Guidelines to submit either a written or public comment as required by the  HHS below:

1. To submit a written public comment:

  • Submit an email to tickbornedisease@hhs.gov
  • Use the email subject line: Written Public Comment – November 17
  • Deadline: All written comments must be received by 11:59 p.m., ET, Friday, November 6
  • Provide your preferred identification: Tell us how you prefer to be identified with your comment. We cannot post your comment without this information. You may choose one or more of the following options:
    • Use your name
    • Be listed as anonymous
    • Include your city and/or state
    • Provide comments on behalf of an organization (please include the organization’s full name)

2. Writing your public comment:

  • Format: Comments must be in the body of your email or in an attached Word document.
  • Page Limit: Comments must not exceed four (4) pages in Calibri or Times New Roman, 11 point font (text that exceeds four pages will be deleted).
  • Graphics: Do not include graphics, images, text boxes, or tables. If included, they will not be retained.
  • Links: Hyperlinks will only be added for “.gov” sites (local, state, or federal). For all other reference sites, please insert the full URL (e.g., http://learn.genetics.utah.edu/content/epigenetics).
  • Attachments: Do not include any attachments. We are also unable to include attachments as supporting documentation to written comments.

Next steps: Your written comment will be posted to the HHS TBDWG website  before the meeting. If you have any questions or concerns about submitting your comment, contact tickbornedisease@hhs.gov. 

Global Lyme Alliance thanks you in advance for your willingness to submit a written comment to the TBDWG in support of this important initiative. 

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For more:

https://madisonarealymesupportgroup.com/2020/09/25/why-should-we-care-about-lyme-disease-a-colorful-tale-of-government-conflicts-of-interest-probable-bioweaponization-and-pathogen-complexity/

https://madisonarealymesupportgroup.com/2020/09/21/patients-speak-up-at-tbdwg-meeting-you-must-address-persistent-infection-and-chronic-lyme-disease-doctors-are-clueless/