MEDIA ADVISORY FOR: Tuesday, September 27, 2016
CONTACT: Anna Zuccaro | +1-914-523-9145 | [email protected]
TUESDAY 12PM: Seattle 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
SEATTLE, WASHINGTON — On Tuesday, September 27th, dozens of Seattle area residents, medical experts and myalgic encephalomyelitis patients and advocates will rally outside the Henry M. Jackson Federal Building 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 Seattle 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, Rick, a former Boeing Company employee will speak about how he went from being a highly-respected, high-energy Senior Systems Administrator who supported critical computing systems at Boeing to a victim of ME who spent 7 years trying to figure out his illness until he was finally diagnosed with ME at the Mayo Clinic. A 41-year-old woman will talk about being struck with ME at the age of 13 and how it has forced her to give up her dream of being a mother.
WHEN: Tuesday, September 27th at 12:00pm PT
WHERE: Henry M. Jackson Federal Building. 915 2nd Avenue. Seattle, WA. 98104
RSVP HERE: https://my.meaction.net/events/millionsmissing-seattle
LOCAL CONTACT: Richard Lamb, [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 epidg om their lives – from their careers, their family and friends, their daily routines – but that time is over. We need reafremic. explained Jennifer Brea, co-founder of #MEAction. “For too long, people living with ME have been missinl 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 Anna Zuccaro at 914-523-9145 or by email at [email protected]unbendablemedia.com.
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