South Carolina Raises Awareness About ME

Share on facebook
Share on twitter
Share on email

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:
[maxbutton id=”21″ url=”https://my.meaction.net/events/south-carolina-me-awareness-event-presentation-of-state-resolution-for-me” text=”RSVP HERE” ]

Share on facebook
Facebook
Share on twitter
Twitter
Share on whatsapp
WhatsApp
Share on google
Google+
Share on email
Email

Leave a Comment

Your email address will not be published. Required fields are marked *

Latest News

Sign petition To Fix ME/CFS tracking In US!

In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the

Read More »

NICE announces roundtable event to ensure implementation of ME/CFS guideline

NICE announced today that it will hold a roundtable in September as the next step in the publication of the ME/CFS guideline. The roundtable will include representatives from patient organisations and charities, relevant professional societies, NHS England and NHS Improvement, NICE and the guideline committee. It aims to, “better understand the issues raised and determine

Read More »

#MEAction & 6 ME Orgs Call for CDC to Change How it Tracks ME/CFS

Together with six other organizations, we have submitted a proposal to the National Center for Health Statistics (NCHS) to add myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to the neurological chapter of the International Classification of Diseases (ICD-10-CM).  Today, ME/CFS does not exist in the US ICD-10-CM. Instead,  most US doctors assign the code for chronic fatigue

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top