TOUCHED BY LYME: “When the story of Lyme disease is written, it will be the story of patients standing up and being heard."
Highlights from the Tick-Borne Disease forum streamed live from NYC this morning.
New York Senator Kirstin Gillibrand, Connecticut Senator Richard Blumenthal and NY Congressman Chris Gibson were among the luminaries in Weill Cornell Medical College this morning for a forum on “The Silent Epidemic of Lyme and Tick-borne Diseases.”
The session was streamed live.
Moderated by David Roth of the Tick-borne Disease Alliance, the panel also included:
Dr. Roy Gulick, Professor of Medicine and Chief of the Division of Infectious Diseases, Weill Cornell Medical College; Attending Physician, NewYork-Presbyterian Hospital in New York City
John McPherson, nationally syndicated cartoonist, Creator of the “Close to Home” comic, patient advocate
Dr. David Leiby, Head of Transmissible Diseases at American Red Cross
Dr. Richard Ostfeld, Disease Ecologist at the Cary Institute of Ecosystem Studies
Dr. Brian Fallon, Director of the Center for Neuroinflammatory Disorders and Biobehavioral Medicine; Director of Lyme and Tick-Borne Diseases Research Center, Columbia University
Senators Gillibrand and Blumenthal started the ball rolling with excellent summaries of how much Lyme patients are suffering and how the government response to this disease is woefully inadequate. Two of my favorite quotes:
(Gillibrand): “We need a better strategy than just checking our kids after a day at the park.”
(Blumenthal): “When the story of Lyme disease is written, it will be the story of patients standing up and being heard.”
A major glitch in the proceedings, to my mind, was the fact that Dr. Roy Gulick was introduced as giving “some background about Lyme disease.” In fact, Dr. Gulick presented the IDSA/CDC view of Lyme disease, delivered as if it was irrefutable fact. He was allowed to frame the issue. His remarks were NOT immediately followed by somebody saying, “That’s the IDSA point of view. Now, let’s hear from this other person, to give us the ILADS point of view.”
To clarify: I am not opposed to having the IDSA point of view included, if it’s properly labeled as such. (In the second half of the program, David Roth did point out that Dr. Gulick represented the IDSA point of view. It was an important distinction that should have been made earlier.)
Another favorite part of the event for me were comments by nationally syndicated cartoonist John McPherson, who discussed his own struggle with Lyme disease. Take a look at the cartoon he created to depict how restrictive the IDSA Lyme guidelines are:
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TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.
Thank you for posting these, I missed them as was relieved to find them here!
He said she said…was anything concrete accomplished??
Hi Robin,
I think the greatest accomplishment of this forum was that the waters of understanding are now even muddier. There are so few narrow windows of opportunity available when the attention of people in a position to make a difference as far as policy and public understanding are concerned. Once again those people had to walk away with a greatly distorted idea of what Lyme disease is and what is needed to treat it.
As far as the forum panel members are concerned, is it lack of intelligence, economic agendas, or fragile egos at work?
I smell rats!!