City proclamation declares May as Myalgic Encephalomyelitis (ME) Awareness Month
On Tuesday, April 23, Charleston Mayor John Tecklenburg read a proclamation declaring May as Myalgic Encephalomyelitis (ME) Awareness Month and May 12 as ME Awareness Day. Daniel Island resident Dr. Robert Jacobs, whose wife, Sandra, suffers from ME, and others impacted by the disorder worked hard to promote the Charleston proclamation.
The proclamation was an important step in raising the profile of ME.
“News of the event is being disseminated by word of mouth, the media, and the internet,” stated Dr. Jacobs. “The story, including narrative and photos, has been posted on Facebook and #MEAction.net. And my emails are overflowing.”
Daniel Island resident Barbara Walsh attended the event and hopes the proclamation will increase the visibility of the disease.
“So many people there were really listening and you knew they never heard of this disease before. And that’s the key, getting people to be aware of it,” she said.
Not many people are familiar with the crippling impact of the disease. ME, previously known as Chronic Fatigue Syndrome, is a severe, complex, systemic disease that has a devastating effect on the lives of those affected. It can leave patients bedridden or so exhausted they are unable to function and live a normal life.
Many ME symptoms are similar to those of other illnesses, making it hard to diagnose. Currently there is no known cure or test to diagnose the debilitating disease. ME affects an estimated 2.5 million Americans. Worldwide there are approximately 20 million adults and children suffering from the condition. Seventy-five percent of them are women.
Laura Williams has been friends with the Jacobs since they moved to Daniel Island and felt it was important to be at the reading of the proclamation.
“I’ve known them for years,” said Williams. “They’re vibrant, fun, and energetic people. I wouldn’t have missed this event. I want people to know how much this has changed their lives.”
Sandra’s life changed drastically after contracting ME over nine years ago, but she and her husband try to keep a positive outlook.
“Sandra and I have a special relationship, we love and respect one another. She has a chronic disease and I have chosen to ease our burden and make life as pleasant as it can be,” said Dr. Jacobs. “I am fortunate that ME advocacy has emerged as a positive way for me to cope with the pain of ME.”
For Dr. Jacobs, the Charleston proclamation is just a start. There is still a need to increase awareness of ME on both a local and federal level, he said. A press conference is scheduled for May 2 at the South Carolina State House in Columbia to announce a Resolution (S.31) passed by the General Assembly. It will help further raise awareness about ME.
Dr. Jacobs remains optimistic about the progress in research and disease awareness.
“There is an intensive advocacy effort underway in the United States and across the globe,” said Dr. Jacobs. “I am happy to be able to contribute to these efforts in South Carolina and will not stop until there are treatments and cures for this devastating disease and my wife can reap the benefits of these efforts.”
When asked about his outlook for the future he replied, “Since we are in South Carolina, allow me to use our state logo: ‘While I breathe, I hope.’”