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John Herd - Long-Time ME/CFS Advocate

  [ 28 votes ]   [ Discuss This Article ] • August 16, 2009

John Herd grew up immersed in medicine and social awareness. With a physician father, he saw his first operation at age five, and medical issues consumed the conversation around the dinner table.

As a teen, he helped create a teen crisis center and hot line. As an adult, he did volunteer work on a board overseeing the rights of the learning disabled and participated in health care reform efforts.

Always active, John would go on to manage an academic department, build up a successful graphics and design company, hone his photography, illustration and computer graphics skills, and marry and raise a family. While working as a medical photographer at Brigham and Women’s Hospital in Boston – a Harvard teaching affiliate - John watched medical researchers struggle for success and prominence.

By 1987 he was working up to 100 hours a week – fatigued but loving it – until one day he got the flu.

Two weeks later his left side went numb and he couldn’t remember his wife’s name. Two days after that he was in the hospital for an 8-day stay being tested for everything under the sun including stroke, brain tumor and multiple sclerosis.

Just before he left the hospital, an internist told him he probably had something called ‘chronic fatigue syndrome’. That internist would go on to become one of our most prominent ME/CFS advocates; his name was Anthony Komaroff, MD.

John Herd was diagnosed incredibly rapidly for the period, but it made little difference. Before he knew it, almost everything he took for granted – his career, social life, even his home – disappeared. Demonstrating that arrogance doesn’t necessarily stop at the doctor’s office, his family were among the first to cast him adrift.

John started out his first Boston winter with ME/CFS in an unheated apartment without electricity, surviving on handouts from other ME/CFS patients. That help, which may have saved his life, left him ever mindful of the needs of other ME/CFS patients.

As his health improved, John’s natural instinct to contribute re-emerged. First he provided cartoons for the Massachusetts CFIDS Association’s newsletter, then it was articles, and it wasn’t long before he was editor, a support group facilitator and a board member. Eventually, as vice president of the organization, he became an articulate voice for the community on TV and in newspaper and magazine articles.

John broke with the organization in 1994, and since then has been an independent and at times fierce advocate for what he believes best serves the patient community. No stranger to the name change issue, in 2001 he was one of three patient representatives on a Name Change Work Group appointed by a committee of the Department of Health & Human Services.

In 2003, a decision not to proceed on the name change was a bitter disappointment.

But John continued to speak out strongly on a number of issues, including his belief that stronger national advocacy was needed. He has attended virtually all the IACFS/ME International Conferences over the past 15 years. And in 2007, he was awarded the PANDORA Organization’s Sand Castle Male Advocate of the Year Award at the International Patient Conference in Miami, Florida.

Today John Herd lives in Santa Barbara, California. His outreach on behalf of the ME/CFS community extends to journalists, physicians, legislators, medical organizations and support groups. Unable to work for the last 20 years, he remains deeply involved in ME/CFS advocacy issues.

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