MEDIA ADVISORY FOR: Tuesday, September 27, 2016
CONTACT: Brett Abrams | +1-516-841-1105 | [email protected]
09/27: Thousands Protest in 24 Cities Worldwide Demanding Support for People Suffering with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
#MillionsMissing International Day of Action Urges 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
On Tuesday, September 27th, thousands of people around the world will rally to demand justice for myalgic encephalomyelitis, calling for increased government funding for research and clinical trials and more accurate medical education for the disease. The 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, also 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 and path to treatment.
The events will take place in 25 cities around the world, with rallies in 12 cities in the United States and actions in the United Kingdom, Europe, Australia, Canada and South Africa.
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 promotion of inappropriate medical education – currently there is no training for ME in medical schools and mainstream medical education still promotes treatments that can harm patients. 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 day of action 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 appropriate 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 and current research efforts, 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