DI residents donate books about chronic disease to library

Daniel Island resident Robert Jacobs has been battling to raise awareness about a condition known as Myalgic Encephalomyelitis (ME), or Chronic Fatigue Syndrome (CFS), ever since his wife, Sandra, was diagnosed with it more than a decade ago. Last week, he and Sandra advanced the cause a bit further with the donation of several books on the debilitating, and often misunderstood, illness to the Berkeley County Library on Daniel Island. 

 

“I’m so grateful you all are here,” said Sandra from a wheelchair, while addressing those gathered for the occasion. “Bob and I have been married for 13 years and 10 years of that has been this illness. And it came on so ferociously and we didn’t know what it was.”

 

Surrounded by friends and supporters, the couple dedicated six new titles to the library’s collection, including “When Force Meets Fate: A Mission to Solve an Invisible Illness” by Jamison Hill and “The Puzzle Solver: A Scientist’s Desperate Quest to Cure the Illness that Stole His Son” by Tracie White and Ron Davis.

 

At the dedication, Robert also shared two recent proclamations issued by the City of Charleston and the State of South Carolina, documenting May as ME/CFS Awareness Month and May 12 as ME/CFS Awareness Day. 

 

“In a year where COVID really precluded a public presence in the city or the state, I said what else can I do to say these things happened and continue to raise awareness?” noted Robert, a retired rheumatologist. “... I said ‘why not gift the library some of the books?’ It’s a very modest gift ... What a way to give the community a resource that it doesn’t have.”

 

“Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining the Illness” by the Institute of Medicine of the National Academies was also among the titles donated by the Jacobs. This selection, published in 2015, was intended to educate the medical community about the disease, explained Robert. 

 

“This is a severe, chronic, multisystem disease that is biological in nature and grossly underfunded,” he said. “I only wish that had changed minds among all physicians, that’s still a slow process. That’s the problem. We all know what we were taught and despite our openness, it’s sometimes tough to change.”

 

It is estimated that up to 2.5 million people have ME/CFS in the United States, according to Solve M.E., a science-driven disease organization working to discover safe and effective treatments for the illness. The newly established COVID “long haulers” syndrome has similarities to ME/CFS and may offer important clues to the disease, added Robert. In fact, medical researchers have suggested that COVID can serve as a trigger for ME/CFS. 

 

“The estimates are that about 10% of acute COVID patients will go on to develop an illness like this,” Robert noted. “That’s the percentage that developed it following the original SARS, following MERS, following mononucleosis. That will mean there will be more than an additional 3 million people with this illness, so we all pray that we will learn how to diagnose it, how to treat it and, I’d love to say, how to cure it.”

 

For additional information on ME/CFS, visit solveme.org.