MEDIA ADVISORY FOR: Tuesday, September 27, 2016
CONTACT: Madison Donzis | [email protected] | (210) 488-6220
TUESDAY 4:30PM: NYC Activists Protest Lack of Support for Patients Battling with Myalgic Encephalomyelitis
Thousands Worldwide Join In Protests 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
NEW YORK, NEW YORK — On Tuesday, September 27th, dozens of New Yorkers and people from surrounding areas, medical experts, persons with myalgic encephalomyelitis and advocates will protest outside of the regional Health and Human Services Office in Manhattan at 26 Federal Plaza in an effort to raise awareness of myalgic encephalomyelitis, otherwise known as chronic fatigue syndrome. Protesters will demand justice for people living with ME/CFS and call for increased funding for research, clinical trials and medical education into the disease.
The New York protest is part of a global day of protests spearheaded by #MEAction.net, an international network of people empowering each other to fight for health equality for Myalgic Encephalomyelitis. The event aims to bring attention to the #MillionsMissing who have been removed from their careers, schools, social lives, and families around the world due to the debilitating symptoms of the disease. At the protest, renowned medical researcher Dr. Mady Hornig from the Columbia University Center for Infection and Immunity and Dr. Susan Levine, a NYC physician and chair of the Chronic Fatigue Syndrome Advisory committee, and Terri Wilder, an ME Activist, will speak about the need for increased research funding for ME.
“I have had two things on my mind lately—how long am I going to be able to hold on to my job so I don’t lose my health insurance and how could government institutions like the NIH, CDC, and FDA do nothing for the millions of people who have this disease? When I end up really sick in the next few months or years I will know who to blame” stated Terri Wilder, a newly diagnosed New Yorker living with ME.
WHEN: Tuesday, September 27th at 4:30pm ET
WHERE: 26 Federal Plaza, New York, NY. 10278 (Regional Health and Human Services Office in Manhattan)
SPEAKERS INCLUDE: Dr. Mady Hornig from the Columbia University Center for Infection and Immunity (and from the ME/CFS Microbe Discovery Project); NYC physician and Chair of the Chronic Fatigue Syndrome Advisory Committee, Dr. Susan Levine; Terri Wilder, ME Activist.
RSVP HERE: https://my.meaction.net/events/millionsmissing-protest-nyc
LOCAL CONTACT: Terri Wilder, [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, and there is an absence of FDA approved 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 protest 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 protest, or current research efforts into the disease, please contact Brett Abrams at 516-841-1105 or by email at [email protected].
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