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Why Disability Testing for Fibromyalgia is often Misleading: Advice for Fibromyalgia/Chronic Fatigue Syndrome Patients and their Disability Team.
By Richard N. Podell, M.D., M.P.H. and Wendy King, Ph.D., R.N., A.P.N.
Many people with severe fibromyalgia syndrome (FMS) or chronic fatigue syndrome (CFS) still wish that they could continue to work. However, patients may lack the physical and mental stamina to do so on a sustained basis—with sustained being the key word here. Even when severely impacted patients can exert themselves and “push through,” they experience a delayed flare-up of symptoms a few hours or a day later. Such flare-ups may last for several days, sometimes even longer. Unfortunately, the disability testing protocol used by insurance carriers has been structured to exclude all data about this delayed phase, when fibromyalgia flare-ups frequently occur. The Functional Capacity Evaluation, or FCE, is the most common disability test used, and it only collects data during the test period itself, and ignores pain and other symptoms that flare later.
Disability insurance companies certainly have the right to demand proof that a person is unable to work. Malingering and exaggeration are real problems with which insurers must contend. What’s more difficult to understand is why some insurers also dismiss the judgement of those who know best, the physicians, friends and neighbors of the patient, those who are best qualified to confirm how fibromyalgia impacts the patient’s life. Instead, insurers seek “objective” proof by actually watching patients exert themselves. Fair enough, in principle, but not fair or reasonable as often applied in practice, especially for patients with fibromyalgia or chronic fatigue syndrome (the latter also shares the delayed flare-up pattern).
Take, for example, Michael Hogan (a fictional name), a taxi cab driver who developed severe fibromyalgia about three weeks after an auto accident. He went through six months of trying different medications and sought help from physical therapy, cognitive therapy, and nutritional supplements. He felt slightly improved, but still could not work 40 hours a week. After one hour in his cab, his muscle pain flared. After driving a little longer, the pain overcame his concentration. If he pushed any further, he’d be in bed for most of the next day. When that happened, decent sleep was impossible and he would experience severe brain fog.
Michael’s long-term disability carrier asked him to take a functional capacity evaluation (FCE) to “see” if he could work. This was a series of light exercises that included toe-touching, carrying a ten pound weight, crawling, walking, and sitting. The evaluation lasted about two hours. Michael’s attorney, who has fibromyalgia herself, felt that this FCE testing protocol was, by its very nature, misleading, and would drastically underestimate Michael’s true disability. How, she asked, could two hours of testing reveal how Michael would handle an eight hour a day job, for 40 hours every week? She also complained that the FCE would not reflect any information in its report about how Michael felt and functioned that night, or through the next day, when his symptoms were most likely to flare. She asked for our professional opinion. We agreed with Michael’s attorney, and this is why:
First, Michael would have to be evaluated by the FCE on an average or above-average day. On his bad days, which averaged at least one a week, he just couldn’t make it to the testing. However, if Michael went to work only on his “good” days, he would probably only make it one day out of five—no one will hire a person who is that unpredictable. Yet current FCE testing does not reflect this problem. What is needed is a way to test a person on a “bad day,” without endangering the patient’s well-being. Otherwise, unrealistically optimistic results are generated that don’t reflect a person’s true abilities to hold down a job.
Second, the test in which Michael touches his toes for one or two hours can’t possibly predict how he will feel and function hours later, or the next day. Plus, the short test duration does not demonstrate whether Michael can keep this activity up for 40 hours a week. Performing short-duration exercises is the least of Michael’s problems; it’s the delayed phase flare-up response that is likely to prevent him from working on a steady basis. A more appropriate and valid test of ability for people with fibromyalgia needs to realistically mimic a real work week, and include information on how the patient feels during the flare-up phase.
Those who administer the FCE seem to believe that the current test really does predict everything. However, this faith is almost certainly wrong. I have searched the scientific literature and have not found a single scientific paper that even attempts to measure the accuracy of the FCE for predicting the long-term work capability of people with fibromyalgia.
People with severe fibromyalgia don’t have to be told this. As one patient put it, “To rule the delayed flare-up as ‘out of bounds’ makes no sense at all. If it weren’t so unfair, I’d almost describe it as silly.” For Michael, as for most people with severe fibromyalgia, the process of completing an activity or exercise can be difficult, but the hardest part is getting through the flare-up, which may be delayed 6, 23, or 24 hours after the activity that set it in motion. One important question remains: How, in good faith, could one use a test for fibromyalgia and chronic fatigue syndrome that ignores the delayed flare-up phase?
Part of the answer, I believe, is that the FCE was not designed for fibromyalgia, but for a very different set of problems. For example, stiff backs, stiff knees, angina, and emphysema are problems, which for the most part, quickly limit acute activity in ways that are quite clear to an observer. The delayed flare-up phase may seem fairly minor in comparison, at least for the uninformed observer. In addition, the FCE tool came into use long before fibromyalgia and chronic fatigue syndrome were recognized by most doctors.
Now that testers have had experience with conditions that have a delayed flare-up phase, why haven’t they incorporated this phase into the testing? Also, why do they persist in excluding delayed phase data? One potential answer is the power of inertia. People become attached to the tools that they are used to, even when those tools are not the best ones for the job.
This brings to mind a (very) old story. An inebriated, tipsy man was crawling on hands and knees under a bright street light. He was searching for his lost nickel.
“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.”
Like the poor man in the story, current practitioners of FCE are holding fast to a familiar tool, even though it leads them to look in the wrong place, and at the wrong time. Who has the power to redirect this bright light, so that it shines where and when it is needed? Technically, resolving the problem shouldn’t be difficult. Extend the test period so it realistically mimics a full work week that devises a test suitable for bad days, and most importantly, collects data on the delayed phase.
For the last three years we have been doing just this kind of testing under the Food and Drug Administration’s guidance, as part of our research testing of Ampligen, an experimental drug for chronic fatigue syndrome. Sensibly, the FDA requires that we routinely collect data on symptoms and performance for one week before as well as one week after each time we do an exercise stress test on a patient. We are confident we could adapt this tool to allow for better testing for the judgement of disability. In the end, it is imperative that new tools be developed and put to use for disability testing in delayed-phase medical conditions, such as fibromyalgia and chronic fatigue syndrome. We must find a way to redirect the street light.
About the Authors:
Dr. Podell and Dr. King practice together in Springfield and Somerset, New Jersey. They have a long-standing clinical interest in both fibromyalgia and chronic fatigue syndrome. Dr. Podell is a clinical professor in family medicine at the Robert Wood Johnson Medical School. Dr. King, an advanced practice nurse, has been an associate professor at the Robert Wood Johnson School of Allied Health Sciences. Click here to download a paper Dr. Podell presented to plaintiff and defense attorneys at the American Conference Institute seminar on disability litigation.
What Could Be Causing Delayed-Phase Flares?
The answer might have something to do with muscle microtrauma or MMT. Robert Bennett, M.D., of Oregon Health Sciences University in Portland, first proposed the concept of MMT, in which small microscopic tears in the muscles may be occurring in patients during exercise or other physical activities. Ordinarily, the body produces extra growth hormone (GH) to repair these small tears, but he has determined that GH is abnormally blunted in people with fibromyalgia, and likely chronic fatigue syndrome patients as well. In our July 2001 issue of the Fibromyalgia Network Journal we describe Bennett’s growth hormone research and his treatment trial using GH injections. He found that after 6-9 months of GH therapy, patients began experiencing less pain with exercise. In a more recent study described in our July 2002 issue, we describe his research project using Mestinon (pyridostigmine) to reverse the GH blunting that takes place in patients with fibromyalgia. In fact, based on this recent project, Kim Jones, Ph.D., F.N.P., (one of the co-authors on the Mestinon report), was awarded a $2 million NIH grant to pursue a four-year study on the relationship of Mestinon treatment, GH secretion, and exercise/activity in people with fibromyalgia.
Like doctors Podell and King, Dr. Bennett believes that there is a delayed-phase flare that may occur in people with fibromyalgia, and that testing on a single day may not be adequate. Regarding the prediction of function in people with fibromyalgia, Bennett says that this is a difficult and controversial area. He further explains, “Function at any one point in time is dependent upon several variables: in particular pain level, fatigue level, mood changes, medication effects, litigation status, and motivation.” He further states that in his opinion, “The critical feature of dysfunction in fibromyalgia is the inability to perform reproducible and sustained activity over time. This means that function cannot be meaningfully assessed in a single evaluation session. Rather, the same functional measurements each need to be made on at least three consecutive days. Simple tests that we employ include the following: (1) straight arm abduction to the point of muscular exhaustion while holding a 1 kg weight; (2) while seated, perform knee extensions to the point of muscular exhaustion with a 2 kg weight attached to the ankle; and (3) standing up from a sitting position in a chair to the point of muscular exhaustion.”
The above tests are fairly simple to perform, but Bennett emphasizes that the testing must be repeated for at least three consecutive days to be meaningful for fibromyalgia patients. Similar to Dr. Podell’s views expressed in the above article, many patients may be able to perform the tests on the first day, but the testers need to look at a person’s abilities at least three or more days later to adequately determine whether they are able to sustain a job. In addition to looking at a person’s ability to perform a given set of exercises, Bennett also suggests that pre- and post-exercise pain levels be evaluated for each test day. Pain scores that escalate may also reflect problems with sustained function that would be necessary for maintaining a job.
By Joshua Potter, Esq., Pasadena, CA
There have been tectonic changes in the disability environment. By this, I mean that since the publication of the 1990 fibromyalgia syndrome criteria by the American College of Rheumatology, and the 1994 statement for chronic fatigue syndrome by Dr. Fakuda and others at the Center for Disease Control (CDC), little has changed in the disability landscape. There have been judicial skirmishes, insurance refinements, but the largest impact has been in the area of policy interpretation.
The late 1990s has seen interesting, but only minor changes in the way the disability programs address the fibromyalgia and chronic faigue syndrome communities. As early as October of 1998, there were signs within the Social Security Administration (SSA) that some Screening Attorneys were favorably disposed to granting disability for well-defined claims based on these syndromes. Just one month later, some Long-Term Disability policies were beginning to pay initial claims for fibromyalgia and chronic fatigue syndrome, providing that the documentation was sufficiently strong. These events were no more than the seismic precursors to momentous changes that have now been realized in 1999.
On the last day of April, 1999 the SSA issued new regulations that are as staggering as the initial ACR statement and the later Fukuda statement. Social Security Ruling 99-2p (referred to as SSR-99-2p) has caused more than a mere earthquake. It will shatter the entire landscape of disability for individuals afflicted with chronic fatigue syndrome and fibromyalgia. SSR 99-2p boldly announces that these syndromes “are medically determinable conditions.” This simple concept represents a vast breakthrough in appreciation. It is a bold declaration that legitimizes the clinical diagnosis. The requirements for SSR-99-2p are provided in the section below titled “Medically Determinable Impairment Requirements for Chronic Fatigue Syndrome and Fibromyalgia.”
During the last decade, patients have argued with uneven success that their pain and fatigue struggles are legitimate and real. They have struggled against professional gainsayers who have asserted that in the absence of a serological test or scan, the condition is merely a psychiatric manifestation and has nothing to do with clinical medicine. These practitioners, insurance companies, and judges who have invested themselves in the flat denial that illness can exist absent serologic studies must now reassess their position. As a matter of regulation within the SSA, chronic fatigue syndrome and fibromyalgia exist as a disease process. As such, these conditions can result in a finding of disability. SSR-99-2p is not the most complex regulation drafted, but it will require careful reading to appreciate.
SSR-99-2p will not open the floodgates for claims before Social Security. It will serve to exclude more than it includes at first. SSR 99-2p will need superior charting and greater attention to detail, especially by physicians as well as patients. Testimony will have to be more concise and narrowly focused. Within Social Security there will no doubt be some lag time in the application of the new regulation, but greater problems will occur in the mountains of charting that already exist and cannot be altered. It is in the future that the greatest change will occur. This new piece of regulation, as momentous as it is, nests within a series of other complex rules and regulations, and its application depends on demonstrating that the other regulations have been satisfied.
The only way that this most modest requirement can be accommodated is by having complete and thorough charting. Charting means historical medical records that detail the tracking of failed therapies as well as the documentation of symptoms and function. It will not only include one’s medical history, but also work history. Reliance on a shorthand in which the diagnosis appears unsubstantiated and unexplained throughout the chart will simply be unacceptable. The medical community must take heart that the Federal government has taken this momentous step. Physicians who make the diagnosis of fibromyalgia or chronic fatigue syndrome should no longer be subject to derision by their colleagues. But more important to the patient is that the constellation of symptoms needs to be featured within the chart. This is because the symptoms themselves play an important role in any disability determination, whether Federal or private.
A patient’s chart will be considered incomplete if it merely recites the diagnosis and the medications prescribed. Not only must the chart demonstrate that the patient meets the American College of Rheumatology (ACR) criteria for fibromyalgia or the Fukuda Standard in the case of chronic fatigue syndrome, but more importantly, what are the symptoms and complaints associated with that diagnosis? The diagnosis by itself is not the equivalent of disability and will never support a doctor’s comment that the individual is or is not disabled. The legal-medical-vocational amalgam of the sundry facts are what the disability system is predicated on.
As the SSA adjusts to the new rules, and judges become more familiar with SSR-99-2p, so too must the private long-term disability (LTD) carriers. Though the implications of SSR-99-2p are profound to Social Security, they will be revolutionary to the private insurance industry. The great LTD carriers will rapidly have to readjust their positions in light of the new law. LTD carriers will need to look squarely at the functional impact of fibromyalgia and chronic fatigue syndrome because the great debate over the meaning of “medically determinable” has finally been settled.
We stand at the threshold of a new environment. It is imperative that physicians and patients work together to provide clear and concise charting. These are exciting times in which we operate. It’s now time to focus on the diagnosis and consequences of these conditions. The battle to make fibromyalgia and chronic fatigue syndrome medically determinable diseases by the SSA has been won. Take the steps necessary to ensure that you and your health care team are complying with the documentation requirements set forth in SSR-99-2p, just in case you might need to rely upon this new ruling in years to come. Read the final section of this article for more information on what this documentation should include.
Medically Determinable Impairment Requirements for Chronic Fatigue Syndrome and Fibromyalgia
One or more of the following must be documented for at least six consecutive months:
- Palpably swollen or tender lymph nodes on exam
- Nonexudative pharyngitis (sore throat without signs of inflamation)
- Persistent, reproducible muscle tenderness on repeated examinations, including the presence of positive tender points
- There is considerable overlap of symptoms between chronic fatigue syndrome and fibromyalgia, but individuals with chronic fatigue syndrome who have tender points have a medically determinable impairment. Individuals with impairments that fulfill the ACR criteria for fibromyalgia (which includes the minimum number of tender points) may also fulfill the criteria for chronic fatigue syndrome. However, individuals with chronic fatigue syndrome who do not have the specified number of tender points to establish fibromyalgia may still be found to have a medically determinable impairment.
The following tests may be used to help establish a medically determinable impairment in individuals with chronic fatigue syndrome (and fibromyalgia if they meet the criteria):
- Elevated antibody to EBV capsid antigen equal to or greater than 1:5120, or early antigen equal to or greater than 1:640
- An abnormal MRI scan of the brain
- Neurally mediated hypotension as shown by tilt table testing or another clinically acceptable form of testing
- Others tests, such as abnormal sleep studies or exercise intolerance