Researcher Seeks Participants for Chronic Illness Study

NORTHAMPTON— Katie Gartner, a medical anthropology teaching fellow and student researcher at Brandeis University, is pairing with the Lyme Disease Resource Center, Inc. to conduct a study to better understand what it is like to live with chronic illness.

Gartner is especially focused on the experiences of people in the region living with such isolating illnesses as chronic Lyme disease, Postural Orthostatic Tachycardia Syndrome (POTS) and Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME). She is also interested in peoples’ experiences as they relate to interacting with doctors, nurses, naturopaths, herbalists, acupuncturists, etc.

Gartner seeks to interview and spend time with participants who have ever suffered from any chronic or mysterious illness to gather information to add to existing scholarly knowledge. Participants will meet with Gartner in Northampton between now and January 2016 on a volunteer basis.

The interviews will be informal sessions, held between two and five times per year, in 60- to 90-minute intervals with Gartner. The names of the participants are strictly confidential and any volunteer can choose to opt out at any time, she said.

“There are two sides to this project,” Gartner explained. “I'm exploring the ways people cope with having chronic/mysterious illnesses. I interview or spend time with people who contact me to better understand living with chronic illness. I also ask about the kinds of treatments and therapies people receive to see what has and has not been effective for them.”

Gartner also wishes to interview infectious disease doctors, general practitioners and Lyme-literate doctors as well as practitioners of therapies such as acupuncture, naturopathy, herbal medicine and massage therapy to understand how they treat patients with chronic illness.

Gartner hopes her research will add to the scholarly knowledge in medical anthropology. It is a project that will bring awareness to what is known or not known about living with certain chronic health conditions, she said.

Gartner is volunteering this summer and fall at the Lyme Disease Resource Center. She contacted Maria Malaguti, the founder and executive director of the center, when Gartner began her preliminary research on the topic. They both agreed that it would be beneficial to Gartner’s research if she became a volunteer for the Lyme Disease Resource Center. Since then, through Gartner’s volunteer work, she has learned about the community resources available to those living with Lyme. “The leaders there have been extremely supportive of my project,” said Gartner.

Gartner has a bachelor’s degree in anthropology from the University of Massachusetts, Amherst. She is completing this study as a part of her master’s thesis at Brandeis University. She lives in the Northampton area.

The Lyme Disease Resource Center is a 501 (c) (3) nonprofit that incorporated in October 2013. It serves those with tick-borne illness and their care partners, connecting clients and the community to resources, free activities, support groups, complementary therapies and workshops on the issues surrounding tick-borne illness.

For more information on Gartner’s study or to volunteer to take part, contact Gartner at

Photo: "Lyme Disease Bacteria" by NIAID on Flickr. Licensed under CC BY 2.0