On April 23, 2019 at Charleston City Hall, 80 Broad Street, Charleston SC 29401 in Council Chambers, Mayor John Tecklenburg read the City of Charleston Proclamation declaring May as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME) Awareness Month and May 12, 2019 as ME Awareness Day.
Dr. Robert Jacobs, who initiated the Proclamation and organized the event, thanked Mayor Tecklenberg and the members of the Charleston City Council for issuing the Proclamation and specifically thanked Councilman Gary White for introducing the Proclamation. He stated that their recognition of ME is extremely important to the many thousands of patients afflicted by the disease across South Carolina.
Dr. Jacobs was accompanied by fourteen friends, the family of another patient with ME and a piece of art created by a third patient with ME in the Charleston area. All held photos of patients or photos reflecting the personal tragedy of their illness.
Dr. Jacobs is a resident of Daniel Island, SC, a retired Physician and caregiver for his wife who has had ME for more than 9 years. Because of their illness, none of the patients were able to attend.
In a prepared statement, Dr. Jacobs stated that “ME is a devastating chronic 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 South Carolina residents, up to 2.5 million Americans and 17-20 million worldwide. Despite its prevalence, ME has long lived in the shadows and 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 as Dr. Francis S. Collins, Director of the National Institutes of Health, recently stated: “Of the many mysterious illnesses that science has yet to unravel, ME has proven to be one of the most challenging.”
Despite the historical, tourism and quality of life allure of our beautiful City, there is a paucity of medical care available to patients with ME, minimal medical awareness and essentially no research activity. This City of Charleston Proclamation for ME Awareness is a critical first step to raise awareness about this hidden disease and encourage health care providers to allow patients to come out of the shadows.”
South Carolina isn’t done with advocacy. Their next event is in Columbia at the State house on May 2nd. You can RSVP to join here: