Advocacy Alert: 06/23/2004

Publication of this study was announced at Monday’s meeting of the Department of Health and Human Services CFS Advisory Committee. The CFIDS Association of America assisted CDC researchers respond to this reporter’s request to speak with individuals whose careers were impacted by CFIDS and provided additional background material. For more information about the economic study, including a link to the full manuscript, visit http://www.cfids.org/advocacy/2004/c-act_06212004.asp

K. Kimberly McCleary
President & CEO
The CFIDS Association of America

Copyright 2004 U.P.I. 

United Press International

June 22, 2004 Tuesday

LENGTH: 1147 words

HEADLINE: The high price of Chronic Fatigue Syndrome

BYLINE: By DAR HADDIX

DATELINE: WASHINGTON, June 22 (UPI)

BODY: Since developing chronic fatigue syndrome at age 34, 41-year-old Cheri Borsky, a former software developer, hasn't worked and doesn't know if she ever will again. "I was earning a respectable salary," Borsky told United Press International. Now, "I literally cannot make ends meet on the income I have." Borsky is keenly aware of the long-term financial effects of her illness. "I've lost my earning power," she said. Her income is so limited that she cannot save anything for the future, she said. "These are the years that I should be socking [money] away."

CFS costs the United States more than $9 billion each year in lost productivity, or about $20,000 per person annually, not even including healthcare costs, according to a study published Monday in the online journal Cost Effectiveness and Resource Allocation. About a quarter of those with chronic fatigue syndrome, or CFS, aren't able to work at all, and those who do continue to work lose about one-third of their income, the report said.

Those with CFS suffer persistent, chronic fatigue not relieved by rest and have short-term memory and concentration problems, and can also experience other symptoms including sleep problems, headaches, nausea, and sensitivity to noise and light. Most cases begin with a flu- or mononucleosis-like illness.

"Productivity losses, health-care expenses, and reductions in quality of life continue for many years for most affected individuals, and thus would have a substantial long-term impact on the standard of living of individuals with CFS and their family members," the study, report was created by Dr. William Reeves of the Centers for Disease Control, Atlanta, and colleagues Kenneth Reynolds, Suzanne Vernon, and Ellen Bouchery.

CFS also puts a heavy burden on the health care system since those with the illness are sick for long periods of time and there is no known cure. "Continued research ... could provide substantial benefit both for individual patients and for the nation."

CFS costs those with the condition and their families about $6.8 billion a year in lost earnings, and about $2.3 billion in lost household productivity. Women suffered higher losses than men on average: about $21,000 compared to $15,000 for men, the study said. Labor force productivity also declined much more for women -- 63 percent for women and 32 percent for men.

More than three out of four CFS sufferers are women, the study said. Autoimmune diseases like CFS, lupus, and multiple sclerosis typically affect more women than men.

Research estimates that between 400,000 and 800,000 people in the United States are affected by CFS. Of every 100,000 Americans, an estimated 422 have CFS, but about 90 percent have not been diagnosed, according to the Charlotte, N.C.-based Chronic Fatigue and Immune Dysfunction (CFIDS) Association of America. The cause is not yet known, and the disease currently has no cure.

Symptoms on average last about 5 years, but can last as long as 20 years, the study said. Most people seen by health care providers have had CFS for more than 6 years.

John Trussler, now in his mid-60s, was making $90,000 a year as president of a medical center when he was diagnosed with CFS in 1986. It took him two-and-a-half years to be diagnosed. He has been through six experimental programs to treat CFS, without success. "I'm one of the 20 percent that don't improve at all," he told United Press International.

Since his diagnosis, Trussler has drawn Social Security Disability Insurance (SSDI) and long-term disability, equal to about 40 percent of his former pay.

Trussler said because he had almost no bills when he was diagnosed, his family was able to manage. "Fortunately I never had any debt when I was working," he said. "Even with a 60 percent cut in pay we were able to survive because I was in good financial shape."

Trussler knows he has fared better than some others with the condition. "A lot of them barely, barely make it ... they live on $400 or $500 a month."

Those who do recover still don't earn what they could have, since time away from work reduces work experience and therefore opportunities to be promoted, the study said: "Such people are likely to be earning less than they would have if they had remained healthy throughout their working life."

Those who have trouble finding a doctor to diagnose their illness could also inadvertently lower their long-term disability payments by cutting down their hours at work instead of immediately going on disability, Borsky said. Many people who are unaware they have CFS work part-time hours for months, she said, effectively lowering their average salary right before they apply for disability, which is typically based on a percentage of an employee's average salary for the past 12 months. Long-term disability also doesn't provide cost-of-living increases. Some people have seen more than 20 doctors before being diagnosed, said Elly Brosius, who was a 25-year-old junior scientist who had been working in the field of underwater acoustics for a year and a half when she developed CFS.

The fact that CFS is so hard to diagnose also means that some people, like Borsky, exacerbate their illness by pushing themselves at the very time they need to rest. Exactly what triggers CFS isn't known, but Borsky said she and her mother contracted the illness at the same time. Her mother was able to rest immediately and recovered within a few months, but Borsky, who had just started a new job, kept working for some time.

"There's an indication that the illness has a better prognosis if you're able to rest right away ... had I taken more time off and more rest and had I realized how serious it could be, I might not be sick right now," she said. "We as a culture just assume that people can work through these things."

One of the hardest things is admitting you are that sick, said Brosius. When you can't work, "You feel inadequate, you feel like a burden," she said.

People who develop CFS are also less likely to get married or be in a relationship and more likely to see their marriages end, leaving them without the financial and emotional support of a partner, Brosius said.

CFS can also strike young people, potentially affecting their ability to ever hold a job and support themselves.

"The average age of people with CFS is 45. But the age range is 14 to 69 years of age," Suzanne Vernon, co-author of the study, told UPI.

"CFS has a life-altering and often lifelong impact on those who become ill during adolescence. They miss many of the milestones of youth: playing team sports, participating in graduation ceremonies, learning to drive, entering the workforce, beginning a family," K. Kim McCleary, president and chief executive of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, told UPI.