Los Angeles, Calif.
Although new to the Association – both organizationally and as a brand-new board member – attorney Beth Garfield is excited about the research focus. “I want to find a cure for this disease, and the only way that’s going to happen is if more money is dedicated to research,” she says of the illness that first struck her in 1985.
Garfield became ill on a trip to Hawaii. “I had planned to spend the vacation scuba diving, but instead, was in bed most of the vacation with what I thought was the flu. When I returned to LA, I couldn’t get well,” she says, noting that she went from doctor to doctor and none could explain what was happening to her; most doctors chose, instead, to dismiss her symptoms as imagined.
Eventually, Garfield found a doctor who diagnosed her with Epstein Barr virus. “Even though there was no treatment, it was important to me when a name was given to what I was feeling,” she says, describing her story as “typical.”
In 1989, her mother called to tell her that she had seen a physician on TV who didn’t think that what she had was a virus, but rather a chemical imbalance that could be treated. She pushed Garfield to see him, but Garfield had little hope that the physician would be able to help. “I remember the afternoon that my husband and I met with the doctor. When I left the meeting, I had a sliver of hope that maybe I could get better,” Garfield says. “It was an incredible feeling.” She started taking the medication Sinequan, and for her, it was a “miracle drug.”
Garfield was symptom-free for 22 years before relapsing in February 2011.
Her college friend, Diane Bean, is an Association board member and introduced her to the organization. At reunions, Bean would share stories about her daughter, who also suffers from CFS, and in September 2010, Bean asked Garfield if she could include her story in a fundraising letter that she was sending to their classmates. In her letter, Bean described Garfield as “cured.” Garfield responded in a letter of her own, “I don’t think of myself as cured. I think that I’ve been able to keep it at bay and pray that I will always be able to do. When I think about it – which isn’t very often – I do worry that someday it will take over my life again.”
Five months later, she relapsed.
Bean had previously asked Garfield to consider joining the Association’s board, and when Garfield became ill again, she called Bean to express interest. She was elected to the Board in November and begins her service in January.
Garfield became an early supporter of the Catalyst Fund. “I think that stories like mine can help build funding for this program. Even for people who do well for years, CFS is always there – and there’s always the possibility of a relapse,” she says. “We can either give in to it and live our lives with CFS, or we can fight to find a cure. For me, the choice is clear.”