• Name: Liz Burlingame
• Country: United States
• State: Georgia
• Gender: Female
• Age: 49
• Year of Illness: 1991

Work and Education

• Education: Jr. College
• Former Occupation: Administrative Asst. and student
• Job Responsibilities at Former Occupation:

  I worked as an administrative assistant at the Chattahoochee Outdoor Center, renting rafts on the Chattahoochee River. I worked there for 9 summers. In winter I was an assistant teacher at a nursery school caring for the toddlers. I attended night school at Georgia State University.

• Current Occupation: unemployed, disabled
• Current Job Responsibilities:

  Maintaining a positive attitude while battling a disease that modern medicine has chosen to ignore.

• Years of Work Lost: 26

Income

• Work Status: On Disability
• Income before becoming ill:
  $ 15,600 (adjusted for inflation – $ 27,490 )
• Income from disability:
  $ 7,164
• Minimum Annual Income Loss (income loss adjusted for inflation since becoming ill):
  $ 20,326

Functionality

• Former level of functionality: 100 (No symptoms at rest; no symptoms with exercise; normal overall activity level; able to work full-time without difficulty.)

• Current level of functionality: 10 (Severe symptoms at rest; bedridden the majority of the time. No travel outside of the house. Marked cognitive symptoms preventing concentration.)

• Certified Disabled: Yes

Story

Lately I have begun to feel like this disease has taken too much of my active life. It has been too long. And at this point I have no good options. I endure for lack of any better ideas. I cannot imagine that I will be this sick for the rest of my life, but it is equally unbelievable that I have been this sick for so long.

On an average day, I spend some 80% of the time either in bed or lying down somewhere. If the weather is nice, I lie down outside, or oftentimes on the floor, (the floor is always flat and readily available), but I have to lie down. I cannot sit up for any length of time. Standing is doable but for only short periods of time.

My nights are 12 – 14 hours long. It’s incredible to me that such an illness is so totally untreatable. It’s incredible that so few doctors focus on treating ME/CFS patients. I live in Atlanta, a city of 5.8 million people, home to the CDC, and noted for its medical facilities, but there are so few doctors here that treat ME/CFS that most patients I know travel to South Carolina to consult a doctor there.

I want to grab disbelieving doctors by the lapels and shout, “A little help, please!” Modern medicine has dismissed Chronic Fatigue Syndrome possibly because the name sounded so negligible. It sounded far more like a complaint than what it really is. CFS is a disease. And calling it ME/CFS helps, because at least that sounds like a disease. And for too many of us, we require some kind of intervention to recover from it. I want the medical community to really get that. To really understand that motivation, education, intention, focus – none of these things cures CFS. We are sick. Sheer force of will is not the cure. Only an understanding of the disease process will lead to a cure. We need help.