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South Carolina Raises Awareness about ME

My name is Robert Jacobs, MD and I am a retired Physician and caregiver for my wife who has
had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for more than 9 years.
Despite the historical, tourism and quality-of-life allure of this beautiful state, we discovered a
paucity of medical care available to patients with ME/CFS, minimal medical awareness and
essentially no research activity. Around the globe, and right here in South Carolina, ME/CFS
patients are fighting for their lives with a surprising lack of awareness.

About a year ago, I decided that I had to do something to improve the care of patients with this
disease. The route that I chose was patient advocacy with an initial goal of raising awareness
about ME/CFS. This started with a story about my wife and ME/CFS in our local newspaper,
The Daniel Island News. I then moved on to our City of Charleston elected officials and am
pleased to report that a Proclamation was read on April 23, 2019 declaring May as ME/CFS
Awareness Month and May 12, 2019 as ME/CFS Awareness Day.

I then approached our elected State officials. Fortunately, Senator Grooms and Representative
Mace immediately recognized the need to raise awareness about ME/CFS and sponsored a
Concurrent Resolution (S.31) declaring May as ME/CFS Awareness Month and May 12, 2019 as
ME/CFS Awareness Day. The Resolution, announced at a press conference on May 2, 2019,
emphasizes the need for greater public awareness, greater clinical access and increased funding
and research to support the 16 to 39 thousand SC residents living with this disease.

In the course of these advocacy efforts, many friends, family, other patients with ME/CFS and
caregivers provided me with extraordinary support and encouragement. You can see many of
them in the photos that accompany the articles that I have linked below. To stand up at a City
Council meeting or State press conference thinking about those who are unable to attend because
of their illnesses is a profoundly emotional experience. Being with others who strongly support
the cause is essential. So, thank you to all who have helped to make our many successes over the
past year possible.

Contact: Robert P. Jacobs, MD
#MEAction South Carolina
southcarolina@meaction.net

ME/CFS ADVOCACY SUCCESSES IN SOUTH CAROLINA 2018 – 2019
5/16/18Daniel Island News article (personal story)

3/7/19  – Concurrent Resolution S.31 adopted by SC General Assembly

4/8/19Moultrie News article (background and upcoming City Proclamation)

4/17/19Daniel Island News article (background and upcoming City Proclamation)

5/1/19Daniel Island News article (City of Charleston Proclamation)

5/2/19State Capitol Press Conference regarding State Resolution

5/2/19ABC Columbia newscast about State Resolution

5/7/19Post & Courier article (personal story with comments by ME/CFS experts)

Categories: #MillionsMissing, Advocacy, All News, Awareness, Featured news, Local advocacy, United States

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