TOUCHED BY LYME: Re-cap of San Diego IDSA Lyme protest
Challenge: how can a small group Lyme activists send a message to a huge group of ID doctors?
The San Diego Convention Center is a massive complex, at least a half mile long, with multiple entrances. For five days last week, it was filled to the brim with doctors attending the Infectious Diseases Society of America’s “ID Week” annual meeting—which didn’t even offer a session devoted to Lyme disease in its program.
The IDSA’s slogan for the week was “Advancing Science, Improving Care,” which unfortunately is way off the mark when it comes to how the organization deals with Lyme and other tick-borne infections.
So, our first tactic was to hire a truck with a message that we feel more accurately portrays the situation. (This project was underwritten by a generous donor.)
The truck with the ad starting circling the convention center in the morning of opening day—Oct. 17—and kept it up for eight hours a day throughout the conference.
We also put a “splash screen” on our website, along with information about why we protest against the IDSA.
The splash screen itself will go away this week, but a link to the information about the IDSA will stay on our home page for your future reference.
On Saturday, about 50 activists stationed themselves with signs across the street from the convention center. It turned out to be a fortuitous location. Over the three hours of the protest, thousands of conferees streamed out of the big building and crossed the street right in front of us, on their way to lunch in San Diego’s Gaslamp Quarter.
They couldn’t help seeing us or hearing our chants. Some stopped to talk. Some took our pictures. Many doctors expressed surprise at the notion there is even a controversy about Lyme treatment. (Don’t they know what their own organization is doing?)
Some medical reporters covering the convention interviewed various protesters.
The protestors were an interesting lot. Paul Mall, who organized a similar protest at last year’s IDSA conference in Boston, took a 3-day train trip to join us. His booming voice, assisted by a bullhorn, led many of our chants.
A big thank you to all who helped us pull this off.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for education and outreach. Contact her at dleland@lymedisease.org.
Great work to everyone who attended. Wish we could all have been there. Thank you for being the voices of all of us. Special shout out to Paul. 🙂
Congrats! What a fantastic event – so wish I could have been there with my son Jared who is living a healthy life due to brave doctors who ignore the IDSA guidelines.
I concur!
Thank you so much to everyone who was out supporting our cause this past weekend! And the truck- just fantastic. 🙂 Hopefully, your chants were well heard by those attending the IDSA’s Annual Meeting.
Again, thank you for all of your efforts! They are so appreciated!
This was an amazing protest – an impressive and effective effort. The truck was terrific. What a courageous group of dedicated people/patients/protestors. Let’s hope that rank and file IDSA members might have a clue now about the basic controversy. Shame on them for withdrawing from their patient care responsibilities.
Thanks to one and all on behalf of the rest of us who could not attend.
Let the wild rumpus continue!
Beyond words, everyone who worked so hard to make this happen are the most wonderful people in the world. Thank you “Generous Donor” you get a cyber hug <> . In fact Cyber Hugs to all of you.
Thank you.
Congratulations, and thank you for representing all of us!
Thank you thank you,
THANK YOU. Your efforts on behalf of Lyme victims every where are greatly appreciated. I pray that the uninformed drs that stopped to ask ?’s will act on the information they recieved!! If any are reading this I thank you as well for taking time to listen.
Great job, everyone – thx to the generous donor for the truck, for Paul Mall for traveling across country, and to everyone who turned out and made it a success! I hope some of the ID doctors woke up to the issue! Am wondering what some of the chants were. Here in SF, we did two during the SF Lymewalk: “Hey, hey; ho, ho! Lyme disease has got to go!” And…(Bullhorn:)What do we want? (Group:) LYME AWARENESS!! (Bullhorn:)When do we want it? (Group:)NOOOOOWWWWW!!!!!
Thank you everyone out in California from those of us in endemic south eastern Pennsylvania! We sincerely appreciate your efforts and just LOVE the truck billboard – tell it like it IS! To deny care is to encourage suffering, if not also participating in committing murder! It is what it is.
Thanks to all who were able to participate, wish I could have been there but I do make it to DC every year. BRAVO Looks like some awareness has been spread!!!!
Thank you to all the brave people, fighting the good fight. I am grateful to you for being there to affect change, which I hope is soon in the coming. It is unbelievable, surreal, to me what is occurring with this devastating illness. I recently had an infectious disease doctor say to me, “you should not go around telling people you have Lyme Disease, they won’t want to talk to you, I don’t want to talk to you”…I just received a positive blood culture result, which would indicate otherwise. I’m just trying to heal and her attitude baffles me???
In love and gratitude to you all, and may we find health. CW
Please review this article!
She refutes IDEA studies!
http://www.sciencedaily.com/releases/2012/08/120830135314.htm
Thanks for your efforts!
James. Lyme since 1994 and
Thank you for getting out there and going to great lengths to bring light to the Lyme disease disinformation and ignorance that the IDSA dictates. I wish I could have been there with you. The glowing Lyme green activists and balloons really stand out. I’m sure you got their attention! The guidelines must be revised to reflect the truth…this darkness has to go!
Auch aus Deutschland, herzlichen Dank!
Wir verfolgten mit Spannung eure Berichterstattung!
Und wir alle wären so gerne bei euch gewesen, um euch zu unterstützen.
Ihr alle habt großartiges geleistet und dafür danken wir euch von Herzen!
I ran Bonin Petra’s comments through Google Translate, and this is what it said:
“Also from Germany, thanks!
We watched with excitement your reporting!
And we all would love to have been with you to support you.
You all have done great and we thank you from my heart!”
Thanks, Bonin. Danke schön. Dorothy
This brought tears to my eyes…thank you for all your hard work in fighting for those of us that do not have the strength to help you do it right now. When I am back on my feet I promise to keep up the fight until we can get the justice and attention that this disease requires! You are my heros!!!
Thank you, LymeDisease.org, and everyone who attended. I’m so deeply grateful. Am also so deeply grateful to my doctors who also have defied the deeply flawed IDSA Lyme treatment guidelines. And Dr. ____ of Fortuna, CA, I forgive you for thinking I was a nut job and didn’t truly have Lyme. You were just following IDSA guidelines.
Great job! I wish I could have been there! If the IDSA doesn’t get in line with truth we will soon have ourselves a Lymemillion Man March! Their own ignorance of this disease puts their family members at risk, and when they contract the disease — and they will — they may be too late to bring their loved ones back from the brink. I can function today because of my Lyme doctor, but I may never fully recover because of the IDSA. My Lyme doctor saved my life, but my muscles remind me daily of the grave errors made by the IDSA. I believe one of my sisters will die from this disease as she will not seek treatment for Lyme. She bought the IDSA’s shpeel that Lyme is hard to get and easy to cure. She tested CDC positive through Quest, received a short cycle of antibiotics, improved some, quit the antitibiotics early and continues to decline. Lyme disease is malpractice at its finest by the IDSA.
Hello
I have just recently diagnosed with lyme. I live in SD and when to the local LD practitioner . She isn’t very helpful – does anyone know a good way to meet with a qualified DR. here in SD.
THX Chris
Recommend you join the on-line support group CaliforniaLyme: http://health.groups.yahoo.com/group/CaliforniaLyme/