Tick-Borne Disease Working Group, 2018 Report to Congress

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
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Tick-Borne Disease Working Group, 2018 Report to Congress

Post by X-member » Wed 14 Nov 2018 21:43

Tick-Borne Disease Working Group

2018 Report to Congress


https://www.hhs.gov/sites/default/files ... _final.pdf

A quote:
Congressional Action

In December 2016, Congress passed the 21st
Century Cures Act (see Appendix E), designed
to promote new health care innovations for
addressing an array of public health issues.
Section 2062 of the legislation pertains to
advancing research on tick-borne diseases. The
Act requires the U.S. Department of Health and
Human Services (HHS) Secretary to establish a
Federal advisory committee to review current
research efforts and help identify priorities related
to tick-borne disease. In response, the HHS
Secretary formed the Tick-Borne Disease Working
Group (hereafter “Working Group”) to identify
gaps in research, education, prevention, and
access to care.

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Re: Tick-Borne Disease Working Group, 2018 Report to Congress

Post by X-member » Mon 19 Nov 2018 22:15

FEDERAL TICK-BORNE DISEASE WORKING GROUP RELEASES ITS REPORT TO CONGRESS

NOVEMBER 19, 2018


https://globallymealliance.org/news/fed ... -congress/

A quote:
Research New Diagnostic Tests (Recommendation 5.1)

For years, a Lyme disease diagnosis has been problematic. The standard two-tiered test used by mainstream medical authorities and insurance companies is highly unreliable, failing to pick up early disease more than 55% of the time. GLA supports the Working Group’s recommendation to “evaluate new technology or approaches for the diagnosis of Lyme and other tick-borne diseases.” GLA has long stressed the urgent need to develop accurate, dependable diagnostics and methodologies that can lead to reliable diagnostic testing and we are currently funding the development of several such tests.

Expand Knowledge of Persistent Illness (Recommendation 6.1)

Even if treated early, up to 20% of individuals bitten by ticks fail early treatment and become chronically ill. GLA believes strongly in the need to study long-term persistence of symptoms. Thanks to early support from GLA, which included a 2013-14 research grant, Northeastern University’s Kim Lewis, Ph.D., identified not only Borrelia burgdorferi persisters, but also a regimen for eradicating chronic bacterial infections. Under the aegis of a 2017-18 GLA grant, Dr. Lewis continues to identify drugs and drug combinations useful for treating Lyme disease more effectively than current therapies. Another GLA grantee, Ying Zhang, M.D., Ph.D., of Johns Hopkins Bloomberg School of Public Health, is studying how essential oils can kill persister bacteria where traditional antibiotics fail and how antibodies against persister antigens may better identify Post Treatment Lyme disease Syndrome patients.”

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Re: Tick-Borne Disease Working Group, 2018 Report to Congress

Post by X-member » Thu 22 Nov 2018 0:45

BREAKING NEWS: Julia Morgan, Wales Member of Assembly, works with Lyme advocates to address the Lyme epidemic.

Jenna Luché-Thayer. November 21, 2018


https://www.linkedin.com/pulse/breaking ... he-thayer/

A quote:
Additionally, many of the participants in the US Tick Borne Diseases Working Group and subcommittees appear comfortable taking 100s of 1000s and millions of dollars for Lyme research to produce nothing that benefits the patient populations.
In contrast, strategic political and legal actions by advocates can:

—set free long suppressed and valid science
—open access to existing and future diagnostic and medical care options
—secure our human rights.
Last edited by X-member on Fri 23 Nov 2018 15:43, edited 1 time in total.

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Re: Tick-Borne Disease Working Group, 2018 Report to Congress

Post by X-member » Thu 22 Nov 2018 0:59

Perhaps this also belong in this thread?

Nominations open for federal TBD Working Group public members

https://www.lymedisease.org/nominations ... c-members/

A quote:
Resumes or curricula vitae from qualified individuals who wish to be considered for appointment as a member of the Working Group must be received no later than 5:00 p.m. EST, on December 14, 2018.

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Re: Tick-Borne Disease Working Group, 2018 Report to Congress

Post by X-member » Fri 23 Nov 2018 15:45

The HHS Office of the CTO announces a “Lyme Innovation” initiative

https://www.hhs.gov/cto/blog/2018/11/20 ... ative.html

A quote:
The 2018 report from the Tick Borne Disease Working Group - PDF, calls for “a strategic approach to public-private partnerships and collaborations, so that tick-borne diseases as a national priority will not only involve the Federal Government, but will also harness the power, resources, commitment, and innovation across all sectors—industry, academia, non-profit organizations, as well as local, state, and other governments.” The report recommends Federal action now.

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Re: Tick-Borne Disease Working Group, 2018 Report to Congress

Post by X-member » Fri 23 Nov 2018 16:07

BREAKING NEWS: Scottish Parliamentarians Take On Lyme

Jenna Luché-Thayer. November 22, 2018

https://www.linkedin.com/pulse/breaking ... he-thayer/

A quote:
Recently, it appears that some members of the US Tick Borne Diseases Work Group have tried to gain international support by indicating there are opportunities for joint research projects—mostly funded by US dollars—with Lyme and TBD doctors and scientists in other countries. These members appear to have a recruitment strategy that has the potential partners adopt their language and bias—for example, encourage potential partners to use Post Treatment Lyme Disease Syndrome. To note, the target for these US funded research incentives appear to be non US Lyme leaders who clearly state Lyme infection can be persistent and immunosuppressive requiring extended treatment and have resisted the fraud of Post Treatment Lyme Disease Syndrome.

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Re: Tick-Borne Disease Working Group, 2018 Report to Congress

Post by X-member » Sun 2 Dec 2018 16:46

Meetings

https://www.hhs.gov/ash/advisory-commit ... index.html

A quote:
The Tick-Borne Disease Working Group meets at least two times a year. All meetings are open to the public and records of the proceedings will be kept as required by the Federal Advisory Committee Act. Notification of all meetings will be announced in the Federal Register.

Upcoming Meetings

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

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Re: Tick-Borne Disease Working Group, 2018 Report to Congress

Post by X-member » Tue 4 Dec 2018 12:13

BREAKING NEWS: Tick Borne Diseases Working Group Reviews Over 700 Public Comments and Uses Zero

Jenna Luché-Thayer. December 3, 2018


https://www.linkedin.com/pulse/breaking ... 700-jenna/

Some quotes:
On December 3, 2018, the Tick Borne Diseases Working Group (Working Group) held their final Public Meeting related to their 2018 Congressional Report.
Many in the Lyme community TRUST the Working Group will continue to promote the term Post Treatment Lyme Disease Syndrome (PTLDS) and ignore the fact the term is used to DENY ACCESS TO MEDICAL CARE.
Transparency and accountability are foundational to democratic processes. The Working Group has failed these principles in epic manner.

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