What is ME/CFS?
What people say about ME/CFS:
Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome—commonly referred to as ME/CFS. This disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort. ME/CFS can severely impair patients’ ability to conduct their normal lives. - Institute of Medicine Report , Feb. 10, 2015.
“Hopefully one day, my dream is that our medical community will produce a formal apology to the patients that—not having believed them all these years—they are facing a real illness.” - Dr. Jose Montoya, CFS researcher and clinician, Stanford University (during a lecture on Chronic Fatigue Syndrome at Stanford University on March 3, 2011)
In 2011, the Norwegian Directorate of Health apologized for the way ME/CFS patients in Norway have been treated. Such a public apology from a governmental health agency had never occurred before.
"This disease leaves people bedridden. I’ve gone through phases where I couldn’t roll over in bed. I couldn’t speak. To have it called “fatigue” is a gross misnomer. Most people, when they hear the disease name, it’s all they know about it. It sounds so mild. When I first was sick, for the first 10 years or so, I was dismissed. I was ridiculed and told I was lazy." Laura Hillenbrand, author of Seabiscuit and Unbroken, in a New York Times article, Feb. 4, 2011
“My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my ME/CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses [HIV and ME/CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V.” - Dr. Nancy Klimas, Institute for Neuro Immune Medicine at NSU