At the protest I had a long talk with some of the attendees about strategies for getting political groups from across the nation to work together more effectively.
From the Mayday Project, “Fox and NBC came out to cover the story. The story ran this evening.”
Thank you for your phone calls to the media. At one point one of the outlets called to say that they had received over 1200 calls, that they were sending out a reporter, and to please stop calling.
KarlaL
Lyme Advocates Call on IDSA to Focus on Patient Care Instead of Attacking Those in Distress
For the second day, Lyme patients and supporters from around the U.S. gathered in Arlington, VA, at the Infectious Diseases Society of America (IDSA) headquarters, to call attention to the epidemic of chronic Lyme disease and to ask the question: Why does IDSA continue to fight with and vilify patients instead of producing guidelines that would enable those who are chronically ill to receive medically necessary treatment.
The most recent incident came from IDSA spokesman and Johns Hopkins physician Paul G. Auwaerter, MD, who says patients with chronic Lyme symptoms dabble in conspiracy theories. “When you don’t understand something,” Dr. Auwaerter said in an interview with the Allentown Morning Call, “you try to insert a framework that makes sense to you.” Auwaerter and other IDSA researchers claim that there is no evidence for the existence of chronic Lyme. . . .
Unfortunately several of the major organizers got really sick and at least one even died shortly after that conference and nothing really ever came of all the good ideas generated at that conference.
Monte with Nat'l Cap Lyme would be a good one to contact if you have not already spoken to her. I saw her in some of the video coverage and her husband was one of the speakers the first day.
Bea Seibert
Posted by KarlaL (Member # 29631) on :
One of the ideas that we discussed involved getting significant grant money for paid staff for a organization like PALS so that the organization doesn't suffer the kinds of setbacks that you are describing above. One of the participants also discussed an organizational model that she is an expert in that allows for transparency and facilitates shared group decision making. We did share these ideas with Monte at the protest. I agree that this type of discussion needs to continue.