September 23, 2010
Dear Lyme Community:
As you know, some Lyme advocates have chosen to pull out of the IOM Lyme Disease workshop http://www.iom.edu/Activities/Disease/TickBorne.aspx. They are legitimately concerned that the agenda is heavily biased against the patients’ interest. We respect their concerns and their decision to pull out of the workshop. However, upon careful consideration, we have decided to participate in the IOM workshop to represent the Lyme patient’s perspective and show support for our presenters. While we have our own reservations, we are working hard to improve the agenda.
Here are some facts and thoughts to consider in making your own decision:
1) The IOM Lyme workshop is not a forum to debate whose science is right or wrong. It is, rather, an assessment of the state of the science as presented from all points of view, for the purpose of determining the science and research still needed. This workshop is not designed to draw conclusions, but to determine where future research needs to go.
2) If Lyme patients and Lyme doctors fail to participate, the only perspective presented will be that of the IDSA. If our Lyme doctors and advocates don’t participate, the committee can’t include them in the record and it will appear in the report as if we don’t exist or care.
3) The IOM committee will accept comments for the record up to 3 or 4 days after the workshop. If you don’t know what was said at the workshop, you cannot draw intelligent comments.
4) Clinicians will have a microphone reserved solely for their use, with extra time allocated to their questions or comments which will be included in the final report. Lyme doctor participation is critical or the IDSA clinicians will be the only ones at the microphone and on record.
5) A Congressman worked hard for the appropriation to fund this project. Abandoning this workshop is abandoning him, and will compromise his future ability to argue successfully for Lyme patients in Congress. This Representative needs Lyme community support at this workshop. We cannot “burn our Congressional bridges” with the very people who are critical to our cause.
6) When you withdraw from the Washington process, you won’t be asked back again. Each time this happens, we lose our ability to be taken seriously. History shows that progress is made when we work within the system, not when we abandon it. Admittedly, it is by nature, a long and arduous process.
Bottom line: the workshop will proceed with or without our community; without representation we concede to the IDSA. We can’t let that happen! If the situation warrants it, there will be time to write a minority report.
Please attend this workshop and explain your views on the gaps in science and the research you think is needed. For example, the gaps in diagnosis that caused your disease to go unrecognized; the lack of uniformity in approaches of the states; the problem of underreporting; the unreliability of testing and the other issues you believe should be addressed by the science.