A big thank you to all the patients, advocates, doctors, and researchers who participated in the Institute of Medicine (IOM) workshop held on October 11 and 12.  During the workshop, we kept the discussion focused on patients and their needs and our voices were heard.  In closing remarks, the chair of the IOM committee, Dr. Lonnie King, acknowledged Lyme patients’ contribution, that our “probing questions, perspectives and views have really enriched this workshop. They certainly have enhanced our knowledge and understanding.”

We were excited that the IOM was responsive to the National Capital Lyme and Tick-Borne Disease Association’s request to include Dr. Ben Luft as one of the lead speakers. Luft reminded everyone that “Science is not a belief but the will to find out.”  How encouraging to finally hear a number of researchers at the workshop recognize the persistence of Lyme disease. The presenters admitted big gaps in research regarding the understanding of chronic Lyme disease and how to get patients better.

The IOM committee singled out Pam Weintraub’s powerful presentation in which she spoke on behalf of all patients, spouses and parents of children who are battling this devastating disease  Pam talked about the difficulties that patients face in getting correct diagnosis and treatment: “To help patients, medicine must acknowledge their pain, and science must deal with the complexities.” The response to Pam’s presentation was a standing ovation.

The workshop addressed the burden of children ill with tick-borne infections. With keen understanding and compassion for children with chronic Lyme, Dr. Richard Jacobs, president of Arkansas Children’s Hospital Research Institute, reminded us, “For a child, long-term effects last 50 to 70 years.”

Unexpected open dialogue was started but must continue to be effective.  As NatCapLyme’s Gregg Skall said in his concluding remarks it is only through collaboration of scientists, patients and physicians who treat chronic Lyme disease that we halt the destruction of this disease.

NatCapLyme encourages all its members and friends to go to our website where you will find links to view the final summation webcast and to the slide presentation. Click Here for Final Summation

Please read NatCapLyme’s paper, the The Human Dimension of Lyme and Tick-Borne Diseases.