The federal Tick-Borne Disease Working Group held two days of meetings in Philadelphia this week. I watched the live-streamed proceedings via YouTube both days. On the second day, I gave the following public comments via telephone:

My name is Dorothy Leland and I am vice-president of LymeDisease.org

I have two points regarding yesterday’s meeting. The first speaks to “process integrity” – how this Working Group should operate.

Why in the world did David Walker cast proxy votes for Eugene Shapiro?

The point of the Working Group is for people from diverse scientific viewpoints to listen to each other, discuss the issues, and THEN decide how to vote. Dr. Shapiro wasn’t in the room and didn’t take part by phone. Yet, Dr. Walker cast votes on his behalf.

Why is this even allowed? If it doesn’t technically violate a rule, it certainly violates the spirit of the Working Group. It mocks the concept of the healthy exchange of ideas. Here, somebody doesn’t have to participate at all…and still has a vote.

When Dr. Shapiro was first named to this group, LymeDisease.org protested vociferously—because of his flagrant financial conflicts of interest. More than 37,000 members of the Lyme community signed our petition to remove him from this panel. It fell on deaf ears.

Dismissing the needs of chronic Lyme patients

My second point about yesterday’s meeting concerns Ben Beard’s defense of the CDC website—and his dismissal of questions about the validity of Lyme disease testing.

Beard stated—and I quote—“The vast majority of Lyme disease patients are served quite well by the guidance we have on our website. The diagnostic test is reliable in terms of it telling you what you expect to hear.”

Here’s my response: It’s true that some people get Lyme, get treated, and get well—in short order. But many people don’t get well. They stay desperately sick for years, often losing their jobs, their homes, their marriages, their families. Children lose their childhoods, often too impaired to go to school.

The CDC acknowledges that 10 to 20 percent of Lyme patients remain ill after treatment. Over 20 years, that could mean up to three MILLION people with persistent symptoms of Lyme disease–using the CDC’s own figures.

And that doesn’t count people who remain undiagnosed and untreated. They are the ones most ill-served by the CDC’s “guidance”—and a lousy lab test.

Another process irregularity

Beard’s comment highlighted another process irregularity with the Working Group. 2018’s group had three representatives of the Lyme patient community. This 2020 group has only one—Pat Smith.

Meaningful patient representation requires more than a single voice crying in the wilderness.

When Pat raised questions about patients with persistent Lyme disease, the CDC spokesman dismissed those concerns—and there was nobody else willing to support the patient point of view.

This Working Group was created due to the efforts of patients with persistent Lyme disease—not people who got well quickly. Those folks don’t NEED a Working Group. I urge you not to forget your core constituency.

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Here is a two-minute clip of Pat Smith taking representatives of the CDC and the NIH to task for their cavalier attitudes towards chronic Lyme patients. If you’ve got hours to spend, you can watch both meetings in their entirely. Day One and Day Two.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.