https://www.linkedin.com/pulse/jenna-luch%C3%A9-thayer-may-16-2018-public-comment-disease-luche-thayer/

May 16, 2018. Jenna Luché-Thayer’s Three Minute Public Comment to Tick-Borne Disease Working Group

“As of yesterday, (May 15, 2018) this Working Group effort appears to have:

  • Violated FACA law by obstructing the public’s right to properly prepare for public meetings with access to materials used by federal employees.
  • Shifted to maintaining the status quo while possibly channeling federal funding to specific organizations and individuals.

Most Subcommittee recommendations that could help to immediately improve access to diagnosis and treatment options were removed in favor of ideas that will take much time and money to yield results, such as establishing the Centers for Excellence and the establishment of a new federal website even as the National Guidelines Clearinghouse is defunded.

Pathogenesis appears to restrict Lyme to Borrelia burgdorferi and skirt the many borrelia strains that cause Lyme-like illness and are found in the USA. This restrictive approach will not help to open access to diagnosis and treatment options.

The Working Group’s conflicts of interest information needs to be made available to the public.

For example, the Chair John Aucott’s 2015 filed patent for measuring CCL19 cytokines could be used in relation to the sequalae and complications from Lyme he listed in yesterday’s meeting [1]. Aucott could make money while this restrictive technology is possibly misused to channel which Lyme patients:

·      receive extended antimicrobials to reduce infection or

·      biologics that modify symptoms and suppress the immune function.

The Subcommittee for patient access to care and support veered off their scope of work to identify Lyme groups mostly affiliated and associated with Lyme Disease Association as service providers for the Lyme community.

Such organizations only address ‘a drop in the bucket of need’ related to this epidemic and I sincerely hope the focus on these particular organizations is not an attempt to steer tax dollars to support their activities, as that would be extremely unethical and have limited results.

All Subcommittee Reports were not available until the May 10, 2018 public meeting and there is no evidence the 1000+ public comments were reviewed for these Reports.

These and other practices have obstructed public preparation for a high-stakes Report for diseases that may disable, bankrupt, and kill.

Additional Concerns

1.  The Vice-Chair is a Senior Research Scholar from Stanford University on assignment to the Office of Management and Budget, and apparently not a federal officer [2].

As seven federal members are required by law [3], I ask she be replaced with a federal officer familiar with complicated and persistent Lyme and coinfections, including tick-borne diseases.

2.  The Chair Aucott terminated Dr. Enid Haller without cause and to date, has not put in writing the defamatory accusations he made in the presence of the Vice-Chair, former DFO [Designated Federal Officer], current DFO James Berger and Co-Chair Scott Cooper.

I ask the Chair be replaced with a medical professional who has a reputation for ethical treatment of Lyme patients and advocates.

3.  Some advocates on the Working Group and Subcommittees have tried to inhibit advocacy efforts regarding FACA transparency; this is disturbing, unacceptable and now on public record.

4. Why were two security men with Flak jackets needed?

5. And, how high does the body count have to be for you to do something?”

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[1] https://patents.google.com/patent/US20160305956

“In a specific embodiment, a method comprises the step of prescribing or administering a second course of antibiotic treatment to a patient who is determined to have an increased level of CCL19 as compared to a control after completing a first course of antibiotics for Lyme disease.”

[2] https://www.linkedin.com/in/kristenhoney/

[3] https://www.hhs.gov/ash/advisory-committees/tickbornedisease/about/21-century-cures-act/index.html

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**Comment from Allison Caruana, treasurer at the Mayday Project and Owner of Lyme Disease Awareness Flags””

Did you know that John Alcott has a patent on CCL9 (MRP2), a cytokine associated with inflammation properties of Lyme Disease, and is directly associated with the ability to develop co-resistance to macrolides? Besides tetracycline, macrolides are the only antibiotic thought to have some (not complete) impact on the control of Rickettsia, a quasi cross-kingdom bacteria/virus. Did you know that macrolides have antiviral properties that help reduce inflammation through an “unknown” mechanism? But wait a minute…Alcott has a patent on CCL9 (MRP2) for its anti-inflammatory properties!!!! Excuse me? What does Alcott really know? Don’t you think he should answer that question?