MEDIA ADVISORY FOR: Tuesday, September 27, 2016
CONTACT: Madison Donzis | [email protected] | (210) 488-6220
TUESDAY 11:30AM: Chicago Residents Protest Lack of Support for Patients Suffering with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
Thousands Worldwide Join an International Day of Action Urging Public Health Officials to Ramp Up Funding for ME/CFS Research, Clinical Trials and Education
Myalgic Encephalomyelitis is a Neuroimmune Disease That Impacts as many as 2.5M Americans
CHICAGO, ILLINOIS — On Tuesday, September 27th, dozens of Chicagoans, medical experts and myalgic encephalomyelitis advocates and patients will rally outside the James Thompson Center in an effort to raise awareness of myalgic encephalomyelitis/chronic fatigue syndrome and call for increased funding for research, clinical trials and medical education into the disease.
The Chicago rally is part of an global day of action spearheaded by #MEAction.net, an international network of patients and allies empowering each other to fight for health equality for Myalgic Encephalomyelitis. The event aims to bring attention to the #MillionsMissing around the world who suffer from the disease with little hope for improvement- lacking a clear cause of their disease or path to treatment. At the demonstration, Chicago mother Amy Mooney will talk about how her 11-year-old daughter has been robbed of her childhood by ME spending 90 percent of her days in a dark room in pain, and missing her 4th, 5th and 6th grade education. Co-organizer Ceil Rothbartwill will speak of her own 10 year battle with ME, and how a community of online activists has given her renewed hope for change.
WHEN: Tuesday, September 27th at 11:30am CT
WHERE: James Thompson Center. 100 W Randolph St, Chicago, IL 60601
SPEAKERS INCLUDE: Marcie Zinn, Ph.D, experimental neuropsychologist, DePaul University Center for Community Research; Leonard Jason, Ph.D, DePaul University Center for Community Research; Carol Head, President of SolveCFS Initiative, Chicago mother Amy Mooney whose 11-year-old daughter suffers from ME/CFS. Ceil Rothbart has lived with ME for ten years and will speak of the illness from an adults perspective.
RSVP HERE: https://my.meaction.net/events/millionsmissing-chicago
LOCAL CONTACT: Amy Mooney & Ceil Rothbart, [email protected]
#MillionsMissing events will take place in 25 cities around the world, including 12 cities in the United States.
FIND AN EVENT HERE: http://millionsmissing.org
Myalgic Encephalomyelitis (ME), or Chronic Fatigue Syndrome (CFS), is a systemic neuroimmune disease characterized by post-exertional malaise (a severe worsening of symptoms after even minimal exertion). It causes dysregulation of both the immune system and the nervous system. The effects of ME are devastating enough to leave 25% of patients housebound or bedbound and an estimated 75% unable to work.
The #MillionsMissing movement has emerged as patients are outraged over the continued lack of research funding and the absence of medical education – currently there is no training for ME in medical schools. Researchers have estimated that 1 to 2.5 million Americans have ME – more Americans even than those who suffer with Multiple Sclerosis – yet as the National Academy of Medicine noted in its report, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness,” there has been “remarkably little research funding” to date to discover its cause or possible treatments.
Earlier this month, 55 members of Congress signed a bipartisan letter to National Institutes of Health Director Francis Collins urging increased funding for biomedical research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
The #MillionsMissing rally also comes on the heels of a landmark paper published by Robert Naviaux, at researcher at University of California – San Diego, that suggests ME may cause the body to go into a semi-hibernation state.
“This is about more than just a disease. This has become a social justice issue. There simply must be more research funding and medical education in order to stop this epidemic,” explained Jennifer Brea, co-founder of #MEAction. “For too long, people living with ME have been missing from their lives – from their careers, their family and friends, their daily routines – but that time is over. We need real investments in research to guarantee that people who suffer from this disease will no longer be relegated to the shadows. That’s why we are calling on our government to dramatically increase funding into ME research and treatment to help alleviate the millions currently missing from their lives.”
FOR MORE INFORMATION ABOUT MYALGIC ENCEPHALOMYELITIS: http://millionsmissing.org/learn/
For more information, or to speak with someone from #MEAction about ME/CFS, the #MillionsMissing day of action, or current research efforts into the disease, please contact Brett Abrams at 516-841-1105 or by email at [email protected].
A year ago, we were proud to announce that #MEAction and Mayo Clinic Rochester had won a grant for diagnostic improvement, with Ravindra Ganesh, and Stephanie Grach, and I on the grant as co-investigators. Our project, Improving Diagnostic Accuracy of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through Implementation of an Enhanced Education Protocol and Care Process Model