RETURN TO TABLE OF CONTENTS
Fall 2002

Commentary
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 is saying.

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 omit.

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 disability.

There’s little to lose and potentially much to gain by taking the initiative to develop reasonable and fair solutions.

Richard Podell, MD, MPH is clinical professor in the department of family 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 www.DrPodell.org.