Disability Documentation and Functional Testing

Functional Testing, Disability Documentation, and Legal Issues Related to Fibromyalgia and Chronic Fatigue Syndrome

Are you looking for more information about obtaining Social Security disability benefits, or other types of compensation, including long-term disability from private insurers? Read through the articles below to learn about the process of documenting your symptoms and applying for disability benefits. We understand that this is a lengthy document and we encourage you print it out to read. In fact, you may wish to take a copy of this to your legal adviser.

Why Disability Testing for Fibromyalgia is often Misleading: Advice for Fibromyalgia/Chronic Fatigue Syndrome Patients and their Disability Team.

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.

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

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.

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.

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.

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.

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?

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

why do they persist in excluding delayed phase data?

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

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.

Bennett’s Method for Assessing Function in Fibromyalgia

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.”

“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.”

Tectonic Changes in Disability Law

The late 1990s has seen interesting, but only minor changes in the way the disability programs address the fibromyalgia and chronic faigue syndrome communities.

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.”

Medically Determinable Impairment Requirements for Chronic Fatigue Syndrome and Fibromyalgia

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

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

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

A patient’s chart will be considered incomplete if it merely recites the diagnosis and the medications prescribed.

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.

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

Documentation

…view it as an insurance policy

Once you have endured a setback in your health, it is usually too late to start thinking about issues of documentation. The SSA will look at your medical records for the past 12 months and weigh that information against their template. If your physician writes a complete chart, it is possible that disability will be paid. Unfortunately for you and your physician, this scenario is not common these days.

The new SSA ruling will allow an interested reviewer to also take into consideration the personal records of a person with fibromyalgia or chronic fatigue syndrome, such as a journal, diary or notes that describe one’s impairment(s) and its associated impact on function over time. Again, the SSA will be looking at relevant evidence for the 12-month period preceding the month of application to them.

start taking the following precautions now:

See list below comment by Zyp Czyk

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  1. Pingback: Disability Documentation and Functional Testing | All Things Chronic

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