I have summarized the public comments made at the IOM hearing today. I intend to post the statements made by those speaking to the panel that are provided to me. Those who spoke included Pat Smith of the national Lyme Disease Assn., Diane Blanchard and Ann Lyons of Time for Lyme, Gregg Skall of National Capital, Helene Jargensen, author of Sick and Tired, Candy Brassard of the EPA, Rick Smith, Bob Smith, and Julia Rice, a former nurse. Others listed to speak who did not attend were Arthur Weinstein, Phil Baker, and Lynn Shepler.

IOM Hearing: Public Comment Period

Pat Smith—President national Lyme Disease Association.  Addressed the need to identify treatment gaps and diversity of opinion in the final summary as well as the need to include real input from patients in an open and transparent way.  She expressed concern regarding the use of anonymous reviewers for the panel’s work.  Complete speech will be posted here

Diane Blanchard—Co-President Time for Lyme.  Addressed the issue of scientific bias and the importance of separating fact from opinion.  She also emphasized that it was important to listen to patients drawing the parallel to the discovery of Lyme by Polly Murphy, a mother in a local community. Complete speech will be posted here.

Greg Skall— Legal Counsel for National Capital.  Greg emphasized the need to listen to new researchers and not simply follow the research by a handful of researchers who have controlled the disease.

Helene Jargensen, Lyme Patient and author of Sick and Tired (Left copies of written testimony). Analyzed the 4 treatment studies and encourage the panel to invite Allison Delong to present the statistical analysis of the 4 treatment trials.

Panelist Q: Are there good definitions for treatment failure?

A: In my case I was feeling better after 3 weeks and then relapsed and responded to additional treatment.

Candy Brassard, EPA. Candy emphasized how emerging areas of Lyme disease particularly do not know about the risks of Lyme disease.  She noted that there was significant divergency among the states in terms of reporting cases.

Rick Smith, a Lyme patient, has had brain fog—what about the poor patient who is sitting here, offered as resources a presentation by Dr. Joe Jemsek, a copy of Under our Skin. 

Bob Smith, a patient with Lyme who works in computers.  We are missing matrixes to track the disease as well as feedback loops and continuous learning.

Julia Rice, a nurse for 30 years with Lyme, who had to quit her practice because of Lyme disease. 

Ann Lyons, attorney and Vice President of Time for Lyme, addressed the issue of the IDSA guidelines and the failure of the vote on the lab testing and how insensitive the lab tests are particularly for chronic late Lyme.  Her testimony will be provided in full on lymepolicywonk.org.    

Q: Open question from panel regarding the importance of vaccines:

Monte Skall, National Capital, If we do not have a diagnostic test that is 100% effective, how can we come up with a vaccine because you should not vaccinate people with Lyme disease as they can become more ill.

Pat Smith, any new vaccine would require a more rigorous safety review to ensure that people don’t become ill from the vaccine.

Q: Open question re chronic disease terminology:

Unknown male respondent:  You have chronic symptom, we have chronic disease.  The idea is how do you become symptom free.

Pat Smith: Most of the treating physicians regard chronic Lyme disease as existing when symptoms persist after treatment.

Gregg Skall:  Different terms because language is being redefined by researchers—chronic Lyme becomes late stage Lyme disease or becomes something else.  Most patient believe it is persisting symptoms.

Diane Blanchard: There are so many variables that effect this disease.  A person had a tick bite and there were never well  again.  This is how patients see it.

Others listed to speak who did not attend were Arthur Weinstein, Phil Baker, and Lynn Shepler.

You can follow additional comments on Lyme policy at www.lymepolicywonk.org.  You can contact Lorraine Johnson, JD, MBA at lbjohnson@lymedisease.org.