I submitted the following request for a verbal comment to be read during the last TBD Working Group Meeting of 2018. I have yet to receive acknowledgement of my request. Do you think I will be censored from reading this comment???

December 3, 2018, TBDWG Meeting (on-line)

https://www.hhs.gov/ash/advisory-committees/tickbornedisease/meetings/2018-12-3/index.html

“The eighth meeting of the Tick-borne Disease Working Group will be from 1.00 p.m. to 4:00 p.m. (Eastern). During this meeting, the Work Group will review the work of the public comments subcommittee, discuss the release of the 2018 Report to Congress, recognize the subcommittee members for their contributions to the 2018 Report, and address the next steps and transition to a new Working Group for the 2020 Report to Congress.”

Email to the TBD Working Group:

---------- Original Message ----------
From: Carl Tuttle <runagain@comcast.net>
To: tickbornedisease@hhs.gov
Cc:
Date: November 14, 2018 at 3:07 PM
Subject: Verbal Public Comment – December 3 Meeting

Public Comment - Information and Instructions

Verbal comments (by phone):

Requests to provide verbal public comment must be submitted via email on or before November 26

(Eastern) to tickbornedisease@hhs.gov. In the Subject line please enter: Verbal Public Comment – December 3 Meeting.

To the TBD Working Group,

I would like to provide verbal public comment at the next meeting scheduled for December 3, 2018

COMMENT:

It is no secret that the U.S. Centers for Disease Control has aligned itself with the seven defendants named in the Texas racketeering lawsuit.

The CDC has been able to perpetuate this thirty year illusion that “Lyme disease is difficult to catch and easily treated” through focusing on the acute stage of disease after early treatment.

For example:

The CDC financed Gary Wormser’s five year study of the acute stage of disease to the tune of 1.5 million taxpayer dollars.

Published in 2010 known as:

Subjective symptoms after treatment of early Lyme disease.

https://www.ncbi.nlm.nih.gov/pubmed/20102996

Gary Wormser New York Medical College

RESULTS:

At 12 months after enrollment, only 5 (2.2%) of 230 evaluable patients reported new or increased symptoms, and in none of the patients were these symptoms of sufficient severity to be functionally disabling

_____________________________

Summary of Wormser’s study: Anyone experiencing symptoms after the one-size-fits-all early treatment approach is just experiencing nothing more than the “aches and pains of daily living.”

So basically Wormser’s results are then assumed to apply to the entire patient population; in other words, Lyme is no big deal.

Purposely avoiding the advanced stage of disease hides the horribly disabled and anyone unable to see this is somewhat naive.

Forty years have passed since this disease was first recognized but we still don’t know how Lyme disables it victim so we can figure out what we’re dealing with here and how to treat it. In other words, the CDC must stop focusing on the acute stage of disease after early treatment.

But this has been avoided at all cost to maintain the status quo.

The research into how Lyme disables should have been completed by now but the misclassification of Lyme as a simple nuisance disease (hard to catch and easily treated) has negatively influenced the response to this serious and life altering infection.

The U.S. Centers for Disease Control has failed its responsibility to protect American citizens from the devastation of Lyme disease and yet no one is held accountable.

If the Tick Borne Disease Working Group doesn’t recommend the firing of the CDC over the mishandling of a disease that is destroying lives, ending careers while leaving its victim in financial ruin, then we will have another decade of unimaginable pain and suffering. Create a new division within HHS with no ties to the CDC or those named in the racketeering lawsuit; a "Lyme Manhattan Project."

Respectfully,

Carl Tuttle
Hudson, NH