On April 23, at 5 p.m. at Charleston City Hall, 80 Broad Street, in council chambers, Mayor John Tecklenburg will read the Proclamation declaring May as ME Awareness Month and May 12, as ME Awareness Day. Councilman White recognized the importance of raising awareness about ME and introduced the Proclamation.

ME, previously known as Chronic Fatigue Syndrome, is a severe, chronic neuro-immune disease manifest by dysfunction of the neurological, immune, endocrine and energy metabolism systems. There are no available diagnostic tests, no FDA-approved treatments and no cure. ME affects 16 to 39 thousand SC residents, up to 2.5 million Americans and 17-20 million worldwide. Despite its prevalence, ME has long lived in the shadows and has been stigmatized as a psychogenic illness, with those afflicted viewed as lazy or malingering rather than having a serious medical disease.

All of this changed in 2015 when the Institute of Medicine, now the National Academy of Medicine, declared that “ME is a serious, chronic, complex, systemic disease that can profoundly affect the lives of patients.” And according to Dr. Francis S. Collins, Director of the National Institutes of Health, “Of the many mysterious illnesses that science has yet to unravel, ME has proven to be one of the most challenging.”

Securing a City Proclamation was a grassroots effort by people with ME to raise awareness about the lack of health equality for ME patients, many of whom have spent decades homebound and bedridden with little or no assistance. Some patients are so weak they cannot feed themselves.

Robert Jacobs, MD, a retired Physician and caregiver for his wife who has had ME for more than 9 years, said: "despite the historical, tourism and quality of life allure of this beautiful city, there is a paucity of medical care available to patients with ME, minimal medical awareness and essentially no research activity. Around the globe, and right here in South Carolina, ME patients are fighting for their lives with a surprising lack of awareness. The City of Charleston Proclamation for ME Awareness is a critical first step to move this disease out of the shadows."

Important facts:

  • ME/CFS affects an estimated 1 to 2.5 million American children and adults of all races
  • 75 percent of patients are women.
  • There is no diagnostic test, no FDA-approved treatment and no cure
  • At least 25% of ME/CFS patients are home- or bed-bound at some point in their lives. Many are unemployed or have reduced productivity.
  • People with ME/CFS have a lower quality of life and more functional impairment than those with other disabling illnesses such as multiple sclerosis, heart disease, and end-stage renal disease.
  • Symptoms typically persist for years and recovery is the exception.
  • An estimated 84-91% of ME/CFS patients are not yet diagnosed or have been misdiagnosed.
  • ME costs our economy $17- $24 billion annually in lost productivity and direct medical costs.
  • Clinical care and medical education are in a crisis with fewer than 12 clinics in the US that treat ME patients. Few physicians have received training about how to treat ME and, consequently, often recommend treatments that exacerbate symptoms.
  • ME has been in the bottom 5% of NIH funding for decades, typically less than $6 million a year.
  • The 2015 Institute of Medicine (now the National Academy of Sciences) report noted the essential need for more research, observing that “remarkably little research funding has been made available ...especially given the number of people afflicted.”

For more information contact Robert P. Jacobs, MD via email at rpjacobs2002@gmail.com.