People with Fibromyalgia and/or CFS lack the physical and mental stamina to work. Social Security, in the last few years, has become fairly sympathetic. However, private disability insurers tend to be skeptical about claims of disability due to FMS and CFS.
It's understandable, of course, that disability insurance companies want proof that you canít work, proof beyond just your say-so. What is disturbing though is their tendency to doubt the judgment of your doctors and the observations of people in your life who are in a position to say how your disease has limited your lifestyle.
Instead, insurers seek "objective" proof, i.e. demonstrating before their eyes that someone claiming disability is, in fact, not able to function. Fair enough in principle, but in practice the currently favored testing method, called the Functional Capacity Evaluation (FCE) actually casts its focus on someone else's problem, not on the typical pattern of symptoms we normally see with FMS/CFS.
Here's an example:
Michael Hogan (a fictional name) developed severe FMS/CFS about six weeks after an automobile accident he had while driving his taxicab in New York City. After six months on short term disability with medication, physical therapy, cognitive therapy and vitamins he had definitely improved. However, his muscles still ached after sitting still for just an hour. By the end of two hours, his pain would break his concentration. Any longer and he'd likely be in bed all the next day. Even with very low level activity, Michael typically had at least one very bad day each week. Then he could barely move. Decent sleep would be impossible, and his brain would slip into a fog.
Michael's long term disability carrier wanted him to take a functional capacity evaluation (FCE) to "see" if he could work. The FCE consists of a series of light exercises such as toe-touching, carrying a ten pound weight, crawling and walking. He would have to sit still in a chair for roughly a half an hour. Michaelís attorney, who herself had FMS/CFS, felt that this FCE testing protocol would give misleading results, drastically underestimating his disability. She pointed out that the test lasted just two hours, and it made no provision at all for seeing how Michael fared later that night or through the next day. She asked for my opinion.
I agreed with Michael's attorney, and here's the reason why:
Michael would have done the FCE on what he would view as a relatively good day. On a bad day he would stay in bed, and the FCE would be cancelled. So almost by definition, the FCE results would not account at all for Michael's bad days, even though they occurred at least weekly.
More important, how Michael would do over two hours of touching toes and crawling, had little bearing on how he would feel and function the next day, and whether he could repeat this kind of exertion day after day and week after week. The FCE claims to predict that, but there's no scientific basis for that claim. For those who live with this post-exertion delayed-flare up pattern of CFS/FMS, to suggest that just two hours of observation could detect or predict this could be generously described as "silly."
On a good or average day, Michael could get through the immediate two hours of the testing, but he'd be much worse that night and on into the next day. Having him repeat the FCE 24 hours later and then again and again for four or five days in a row would risk a major long-term set-back.
As most severe FMS/CFS patients know, the problem with over-doing is often less what goes wrong right away than how one later feels 6, 12 or 24 hours after over-doing. The current FCE protocol makes no provision at all for monitoring this delayed flare-up. So far as the FCE records are concerned what happens during the acute phase of the test itself is the only thing that counts.
So how could anyone design a test for FMS that simply omits the delayed flare-up phase?
The answer, I believe is this: The FCE was designed for very different types of illness. Their limitations do show up acutely, and the delayed flare-up phase is much less important. This useful way of testing then got carried forward when CFS and FMS first came along, even though the pattern of these conditions is very, very different.
Before FMS and CFS the FCE applied mainly to people with stiff backs, swollen knees, angina or emphysema. These conditions usually show themselves promptly during the period of testing, or within a few minutes afterwards. Any delayed phase flare-up is likely to be fairly small. But it's as if no one ever told the testers that FMS and CFS are different, that in these conditions the delayed-phase flare-up phenomenon is the main cause of disability.
This reminds me of a very old story about the drunk seen crawling on hands and knees searching for his lost nickel under a street light on the corner. (Who can remember when a lost nickel was still worth looking for?)
Where did you drop the nickel?, asked the passer-by. Oh, about half way down the block. So why are you looking for it here? Because the light is so much better.
How can we direct our search light toward where we can find our nickel? To a large degree that's a political and legal question, and Dr. King and I are definitely clinicians not lawyers, lobbyists or politicians. But, the first step, we believe, is recognizing that there is a problem. The next step, is to get together, so that those who need to understand it, get the message too. With good will, it would not be at all hard to adapt the current FCE to include data from the delayed phase. In fact, our office has been doing just that for at least three years, using a delayed phase testing protocol approved by the Food and Drug Administration. This is for our clinical testing of the experimental CFS drug, Ampligen.