On August 20th, 2002, Lyme patients from across the nation travelled to the NYC to protest the bias of The Ninth International Conference On Lyme Borreliosis and other Tick-Borne Diseases. The conference, held at the Grand Hyatt in New York City from August 18-22nd, failed to allow presentations regarding the clinical side of Lyme disease. Specifically, those physicians who have been on the front lines treating Chronic Lyme Disease patients, were EXCLUDED from presenting at this conference including poster sessions!! More than 100 Lyme patients took this opportunity to bring attention to the attempts of Wormser, Klempner et al. to deny the existence of the chronic Lyme disease epidemic.
FEEDBACK FROM ELLEN
I wanted to get out a personal note about Tuesday's event.
The Lyme community, once again, came through big time! You folks are totally awesome. In the middle of the summer, when many are relapsing and others are on vacation, more than 100 people from many states showed up for the protest.
A number of our docs came out to stand there with us in the barricades. I'm sure you can all imagine how empowering this solidarity felt to us.
What we accomplished, and what was EXTREMELY important was that approximately 200 of the conference attendees came down to the ILADS room to see the "Ilads Presents the Clinical Side of Lyme Disease." I believe this is 50% of the conference attendees, and when you subtract the ALDF people from the 400 attending the conference, it is an even higher percentage.
So two hundred doctors who would not have heard the story without our activism translates into thousands of patients who will benefit from our protest. All in all, a pretty good day's work, dontcha think?
We were interviewed by a reporter from the Hispanic Press, a reporter from an Internal Medicine Association publication, and a reporter for the Townsend Letter for physicians. We got a call that the New York Post reporter had gone to the wrong hotel and was trying to make his way to the Hyatt to cover us. However, he never did show up, (which does make one think that his interest in us was that he himself has Lyme.)
I know that many protestors were disappointed that our expectation of media coverage did not come through. In the days before the protest, the organizers had gotten much more encouraging news about media response than we had ever had before for other protests. I know I repeatedly passed this on to Lyme patients, since a small patient showing with the amount of media we were expecting could have been bad for us.
Although it is too late to use this strategy for this protest, I do have an idea for the future. When we have a situation where we think the media should be coming, we show up again in great numbers and, if the media does not show, we march or ride en masse to the local television studio and continue our protest there, turning it into a protest about their failure to cover us.
We just have to keep on doing our part and trying to figure out ways to get the media to do their part. I do think the protest was a great success and accomplished a lot, but felt it was important to address the issue of the media, since the reality was different from what we expected.
So, to recap what the protestors accomplished on Tuesday: TWO HUNDRED doctors were motivated to go to the ILADS room and learn about chronic Lyme disease. Every single one of those attending the International Conference has been made aware of the controversy and that patients were there to tell them that Klempner et. al. are wrong. Two publications that reach thousands more physicians interviewed us. We were there with our signs and our leaflets on perhaps the busiest street of the busiest city in the world, so thousands of people who may not have known about chronic Lyme disease now know we exist. Thus far, I have seen only two articles about the International Conference itself, and they were not from New York newspapers. My guess (without much evidence other than the press stuff on line) is that the conference organizers issued press releases about Nadelman's one dose of doxycycline treatment after a tick bite and about the new vaccine (which could be years away from approval).
Let's see what today's news brings. I am wondering if the lack of mainstream media response to our protest was just part of a lack of media interest in the International conference itself. It did seem to me that the seemingly premature announcement of the vaccine was a ploy to convince the media to cover the Conference on the day we would not be protesting. We'll have to wait for more information to know if this is so.
Whatever is printed, IT IS ALL GRIST FOR OUR ACTIVISM MILL. Whatever is covered in the newspapers about the Conference will be answered by thousands of letters from Lyme disease patients and physicians. In that way ANY publicity that the Conference itself gets will help us.
Thanks to all who participated and those who wished us luck. We succeeded in bring dramatic attention to our cause. We, the entire Lyme community, are really making good on our promise that we would not go away. That is really heroic of us, don't you think? Whether or not you are well enough to attend protests, those who are able to drag their bodies out there know that you are all with us all the time.
Love to all,
"Lyme Disease Victims to Picket International Lyme Conference"
"ILADS Presents the Clinical Side of Lyme Disease" expired link
Conference Agenda (Expired link)
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