ECONOMIC STUDY HITS UPI
Advocacy Alert: 06/23/2004
Publication of this study was
announced at Mondayís meeting of the Department of Health and Human Services CFS
Advisory Committee. The CFIDS Association of America assisted CDC
researchers respond to this reporterís 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
K. Kimberly McCleary
President & CEO
CFIDS Association of
Copyright 2004 U.P.I.
United Press International
June 22, 2004 Tuesday
LENGTH: 1147 words
HEADLINE: The high price of Chronic Fatigue
BYLINE: By DAR HADDIX
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
"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
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
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
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
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.