TBD Working Group Squares Off Over Issue of Persistent Lyme Disease (how abstainers in vote attempted to game the system) Pandemonium Struck

TBDWG votes on including guidelines on persistent Lyme disease in CDC treatment guidelines.
By Dorothy Kupcha Leland

On April 27, 2020, the rubber hit the road for the Tick-Borne Disease Working Group (TBDWG). What seemed like a routine vote quite unexpectedly turned out to be highly significant—because of what it showed us about many members of the Working Group.

This clarifying moment materialized around the issue of persistent Lyme disease, always a controversial issue in the medical world.

Tick-Borne Disease Working Group fight over persistent Lyme disease - Dr Eugene Shapiro

But first, some background.

The TBDWG is a federal panel under the auspices of the US Department of Health and Human Services. Over the past year, it has held meetings, received and voted on recommendations from its various subcommittees, and started the process of compiling a report to Congress that is due in November 2020.

In March, the panel dealt with most subcommittee recommendations during two days of in-person meetings in Philadelphia.

A few remaining issues filled the agenda of the April 27 online meeting. These included recommendations from the Federal Inventory Subcommittee. (Sounds eye-glazing, I know. Who knew we were in for such a show of fireworks?)

The TBDWG had previously asked pertinent federal agencies to provide an inventory of any programs that relate to tick-borne diseases. The goal was to figure out what’s already happening and what still needs to happen.

Based on this research, this subcommittee offered several recommendations that sailed through without a problem. Then things hit a snag with the following proposal:

Recommend that IF the CDC posts any Lyme treatment guidelines, that they include guidelines on persistent Lyme disease.

CDC provides nothing about persistent Lyme disease
It is important to know that the CDC website currently only provides information about early Lyme disease. It offers nothing for people with persistent Lyme, those still sick and suffering long after the acute phase has passed. Non-recognition of persistent infection is a central concern of the Lyme disease community. It is why we fought to have the TBDWG formed in the first place, and why we’ve continued to fight for adequate representation of chronic Lyme patients. (The first incarnation of the Working Group, which prepared the 2018 Report to Congress, had three representatives of the Lyme patient community. This panel has only one, the Lyme Disease Association’s Pat Smith.)

It’s also important to know that for many years, the CDC openly endorsed the IDSA’s Lyme treatment guidelines—which do not acknowledge persistent Lyme. Currently, while the CDC does not list any Lyme guidelines on its website, the Lyme information it posts is consistent with the IDSA guidelines. Thus, to recommend that the CDC include guidelines about persistent Lyme was a big deal—one sure to draw a strong reaction.

Finish the article at the link below where you read about the pandemonium that ensued-

More at the link: https://www.lymedisease.org/lyme-times/2020-summer-advocacy/persistent-lyme-disease/
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Many Blessings,
CrystalRiver