Verbal Comments to the Tick-borne Diseases Working Group, December 3, 2018

by Phyllis Mervine

I’m Phyllis Mervine, Founder and President of the patient advocacy nonprofit LymeDisease.org.

I’m going to focus on the November 26 letter sent by the Infectious Diseases Society of America or IDSA to the Working Group. In their letter, the IDSA accuses the Working Group of attempting “to stifle the voices of physicians who use sound, evidence-based science to direct care for their patients.”

Not evidence-based? Says who?

They say: “We are extremely concerned that the non-evidenced based approach favored by the Working Group.”

I’d like to ask, who decided the IDSA is the sole arbiter of what constitutes evidence? IDSA conveniently ignores the evidence that chronic Lyme disease exists, and doesn’t treat it, so how could they be experts?

If someone presents evidence that doesn’t fit with their theories, they say it’s not “convincing.” Their Lyme guidelines are more than 10 years old and were removed from the National Guidelines Clearinghouse website almost three years ago because they were out of date. The IDSA has no grounds for attacking the Working Group.

The last time the IDSA published new Lyme guidelines was in 2006. They were almost immediately called out by the Connecticut Attorney General for commercial conflicts of interest and suppression of scientific evidence.

“Independent”? Says who?

When the terms of their settlement with the AG required them to convene a review panel, IDSA called it “independent,” but the panel members were actually all members of IDSA and by definition not independent.

Later, the Institute of Medicine used the IDSA Lyme guidelines as a poster child of how not to create guidelines.

The International Lyme and Associated Diseases Society’s 2014 guidelines were the first Lyme guidelines to meet the stringent standards of the Institute of Medicine for trustworthy guidelines.

They are evidence-based and done by the GRADE system and were listed on the National Guidelines Clearinghouse website until its demise earlier this year. They take a very different view of the evidence than the IDSA.

The problem is that the IDSA’s narrow views and refusal to accept new evidence makes it difficult for them to see that someone else might have better answers than they do.

Unfounded claims

Their claim that the Working Group is biased against scientific evidence is unfounded. The Working Group brought together well-qualified scientists from every field, including several federal employees from the Vector-Borne Division of the CDC. The doctors in the Working Group have experience treating thousands of patients at all stages of Lyme disease.

LymeDisease.org’s big data project, MyLymeData, may give us more insight about responders and non-responders to various treatments. I am hoping that among them the Working Group will come up with some answers that the IDSA has failed to provide through their restrictive approach.

Phyllis Mervine founded the organization now known as LymeDisease.org in 1989.