Blog: City Blog

Today is ME / CFS Awareness Day; Henley Bridge Lights Being Turned Blue Tonight

Meeting this morning with about 20 members of a Knoxville support group, Mayor Madeline Rogero made it official: Today is Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Awareness Day in Knoxville.

The lights on the Henley Bridge will be turned royal blue tonight as a show of solidarity with those who suffer from Myalgic Encephalomyelitis, or ME, commonly referred to as Chronic Fatigue Syndrome.

Today is Myalgic Encephalomyelitis Awareness Day in Knoxville. Pictured at left are City Councilman Finbarr Saunders and City Judge John R. Rosson Jr. At the center, holding a proclamation, is Cindy Siegel Shepler, with her husband, David, and Mayor Madeline Rogero.

ME is a neurological and autoimmune disease characterized by overwhelming fatigue, pain, headaches, cardiac symptoms, immune disorders, dizziness and balance problems. More than 1 million Americans - and possibly as many as 2.5 million - suffer from the disease. Its pain can become strong enough to prevent people affected by ME from working or engaging in physical activities for months, even years.

As many as 70 percent of ME victims are disabled for life. There is no cure and no FDA-approved treatment for ME.

In addition, says Cindy Siegel Shepler, 9 in 10 people with ME go undiagnosed or misdiagnosed because the disease is so poorly researched and widely unrecognized. That's frustrating.

"I've been dealing with the effects of ME for 55 years," Shepler says. "I've been taken to a lot of doctors for years and years. Often, they don't understand ME, so there have been a lot of misdiagnoses. But now, five decades after I began seeking help, young people are experiencing the same thing. It shouldn't be that way."

Shepler wants more National Institute of Health research funding.

Currently, she says, ME research funding amounts to just $2 per patient per year - a tiny fraction of what's allocated toward research for other debilitating diseases. Multiple sclerosis research, in comparison, totals about $255 per patient per year.

More research money goes to remedying male pattern baldness, or hay fever, she says.

"That's the biggest problem - the lack of funding for research," Shepler says.

Posted by evreeland On 12 May, 2017 at 3:20 PM