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Disability Tests: Finding a Fix
for the FCE
By Richard Podell, MD, MPH
Mary Tierney is a
divorced, 34-year-old attorney. She has been unable to work since she developed
severe CFIDS in early 1999. Her private disability insurance carrier agreed that
she was disabled, and began to support her with monthly checks at about
one-third her prior salary.
Early this year,
however, Mary’s insurance company re-evaluated her case. What happened next is a
scenario feared by thousands of CFIDS patients across America: The insurance
carrier, using tests that do not measure the true nature of the disability CFIDS
creates, decided to deny Mary further benefits.
Mary was asked to take
a Functional Capacity Evaluation (FCE), a battery of tests insurance companies
employ to determine eligibility for disability payments. The standard FCE
protocol of relatively brief exertion was designed to evaluate a broad range of
conditions, including bad backs, painful knees, emphysema and heart disease.
In most cases, the FCE
works fine. If a person’s back is stiff, or if he or she limps with each step,
one should be able to observe that accurately within just a few minutes. If you
put someone on a treadmill who has angina or emphysema, symptoms — if they are
to occur — will usually appear during the stress test or within a few minutes
after. This “acute reaction” model is what current FCE protocols assume.
However, this is not a
valid model for people with CFS. Mary’s case demonstrates why. Mary reports that
on good days she can read intensely for about an hour, or spend two hours
running errands, but not both. Either way she has to lie down for several hours
each afternoon. On bad days she is much worse.
Most frustrating of
all, when she does have a good day and increases her activity, she almost always
pays a price. Not immediately, but several hours or even a day later, fatigue
and muscle pain would flare and her concentration would fall. She would usually
recover within a day, but if she had extended herself significantly it might
take a week.
Before taking the FCE
test, Mary rested for a few days to be able to do her best. Over about one and
one-half hours she did 15-minute bursts of light to moderate exertion — touching
her toes, lifting 10 pounds, crawling, sitting, etc. Five minute breaks were
allowed between sessions. As the testing continued, Mary told her tester that
her pain was getting worse and she feared that a flare-up of symptoms would take
place by evening. She asked how she could report this to the tester, so it could
be included in her record. The therapist suggested that she take that up with
her case manager. Mary slept all the way home in a taxi, then crawled into bed
and essentially stayed there for the next day and a half. It took about a week
to gain her pre-testing status.
Three weeks later, her
attorney received a letter. The insurance company said that Mary could lift 10
pounds frequently, push, stoop and crouch occasionally and sit in a chair for 30
minutes if allowed to shift positions. The report concluded that she was capable
of resuming full-time work in her old job as an attorney. There was no
explanation of how this judgment was made.
What’s wrong with this
picture? How can someone whose ongoing function is so limited be judged to score
so well on just a one- to two-hour test that the tester is confident she can
work full time?
The answer: A sad
misunderstanding. The FCE tester and CFIDS experts are speaking different
languages. We need a clear translation if each is to understand what the other
Some CFIDS patients
are unable to do even limited exertion. The current FCE can document their
limitations, and they would be viewed as disabled. However, CFIDS often has a
very different pattern. People may push through during short bursts of activity,
but later their symptoms flare and they are not able to function. This delayed
phase response is precisely the phase of testing that current protocols
The standard FCE may
be an excellent and valid tool for evaluating bad backs, but it is not
appropriate, fair or valid for evaluating the delayed flare-up pattern that is
characteristic of CFIDS. We need to add tools to our toolkit, ones that are able
to measure the delayed phase reaction.
If insurance industry
consultants, patients, physicians, attorneys and judges can agree that there is
a problem that needs fixing, it should be fairly easy to design better tools.
For example, one could make FCE testing more realistic by extending its duration
from two hours to four, and by bringing the patient back to repeat the testing
over several consecutive days. There’s a downside risk, of course: Some patients
will become much worse, perhaps irreversibly. However, that risk could be
limited by close medical monitoring, both during and after each test. Insurance
company staff should accompany the patient home and/or check in with them by
phone at intervals. To ensure the accuracy of their reports, patients might
agree to keep a camera in their home or a radio location surveillance device on
their person for several days.
In the Ampligen
research trials, the Food and Drug Administration requires our patients to wear
tachometers. These motion-measuring devices are worn for a week before and a
week after each time we do an exercise stress test. We supplement this
information with detailed questionnaires.
There is a desperate
need to create a forum to develop a new disability assessment paradigm.
Clinicians, disability attorneys and insurers, and rehab and occupational
therapists should work together to define new methods of assessing function in
chronic conditions. This would be a great service to patients with these
illnesses, as well as the professionals they rely on to document their
There’s little to lose
and potentially much to gain by taking the initiative to develop reasonable and
MD, MPH is clinical professor in the department
medicine at Robert Wood Johnson Medical School in New Jersey. His is a principal
investigator in the Ampligen research trials. Dr. Podell practices in
Springfield, N.J. His office telephone number is 973-218-9191. (Please note:
Physicians are not permitted to offer specific medical advice to people who are
not their patients.) For more information, see his Web site at