Chronic Fatigue Syndrome (“CFS”), also known as Myalgic Encephalomyelitis (“ME”) or Systemic Exertion Intolerance Disease (“SEID”), is a debilitating, often misunderstood disease. It is generally characterized by severe, overwhelming fatigue that does not improve with rest, and post-exertional malaise – or the inability to recover normally from even minimal physical or cognitive exertion. Individuals with CFS/ME also experience general weakness, cognitive problems, un-refreshing sleep, muscle or joint pain and flu-like symptoms. Unfortunately, there is no known treatment to cure this disease.
If you suffer from this condition, you may need to apply for long term disability. Knowing how to substantiate your claim (e.g., through medical evidence, proof of treatment, etc.) will help increase your chances of approval.
Here’s what you need to know before filing your long term disability claim for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.
Is Chronic Fatigue Syndrome A Disability?
Chronic Fatigue Syndrome can cause a host of ongoing physical and cognitive symptoms that can result in long term disability. These symptoms can be particularly distressing because they do not improve with rest. Individuals with CFS may be confined to their bed for days or weeks following even low levels of exertion. Your insurance company will want to know all of your symptoms so it can better understand how and why they prevent you from working.
Disabling Physical Symptoms
Physical symptoms of Chronic Fatigue Syndrome can vary in intensity, leading to bad days and better days. Some physical symptoms often include:
- Post-exertional malaise
- Extreme exhaustion
- Muscle and/or point pain
- Un-refreshing sleep
- Enlarged lymph nodes
- Flu-like symptoms such as a sore throat
- Lightheadedness and/or dizziness
- Sensitivity to light and/or noise
- Gastrointestinal problems
- Depression and anxiety
Disabling Cognitive Symptoms
Cognitive symptoms that typically develop due to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis include:
- Short-term/long-term memory impairment
- Problems with concentration, focus, and attention
- Word-finding difficulties
- Confusion or “brain fog”
- Slow thinking or decreased processing speed
- Difficulty with executive functioning
Inability to Work Due to Chronic Fatigue Syndrome
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis can be extremely disabling. However, your insurance company may not understand the nature and severity of your symptoms or the impact they have on your job. To increase your chances of approval, you can explain how and why each of your symptoms prevent you from performing your job duties.
For example, your fatigue, exhaustion, and general malaise may make it impossible for you to carry out your activities of daily living – let alone your work-related tasks. You may not have enough energy to stay awake or alert during an important meeting, or you may have difficulty completing a normal 8-hour workday without excessive breaks.
Your cognitive deficits also may make it very difficult to concentrate or focus on conversations with co-workers or on preparing that important memorandum within a strict deadline. Your inability to quickly process information may prevent you from understanding complex matters and cause you to work at a slower, unsatisfactory pace.
Many people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis find it difficult to maintain a normal level of activity. They experience “push-and-crash” cycles. This occurs when, on a “better” day, you push yourself to perform more tasks or activities than you normally would attempt given your symptoms. Unfortunately, even a minimal, routine task like cleaning your bedroom can result in a severe relapse of your symptoms (a.k.a., a crash), leaving you bedridden for days or even weeks on end. This can be particularly troublesome since all jobs require regular attendance and frequent absences will not be tolerated by most (if not all) employers.
How Do I Get Disability Benefits For My Chronic Fatigue Syndrome?
Your insurance company will likely want objective proof of symptoms and/or a diagnosis for any long term disability. Chronic Fatigue Syndrome/Myalgic Encephalomyelitis is no exception.
Your Diagnosis is Key
The first step in filing a Chronic Fatigue Syndrome long term disability claim is to secure a diagnosis with your treating doctor. Your insurance company will require proof of your diagnosis in order to approve your claim.
The problem with Chronic Fatigue Syndrome is that there is no single test that can confirm a diagnosis. Therefore, it is often difficult to objectively verify its symptoms.
When applying for disability, it can be helpful to prove the Chronic Fatigue Syndrome diagnosis using the criteria established by the Institute of Medicine of the National Academies, which requires:
- At least a 6-month history of a substantial reduction/impairment in the ability to engage in pre-illness levels of activities accompanied by profound fatigue of new or definite onset that is not the result of ongoing excessive exertion and that is not substantially alleviated by rest; AND
- Post-exertional malaise; AND
- Un-refreshing sleep; AND
- Cognitive impairment OR orthostatic intolerance.
Medical Evidence Substantiates Your Symptoms
When determining whether your Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis is disabling, the insurance company will likely want the opinions of your treating doctor(s). The insurance company may weigh its decision very heavily on your doctor’s opinion – so your doctor’s support is key.
Your insurance company will conduct a broad review of your medical records to assess your diagnosis and symptoms. Your insurance company is most likely to look for evaluations by a physician, including:
- A thorough history;
- Physical examination;
- Specific workups to determine a differential diagnosis; and
- Referrals to appropriate specialists to rule out other causes to the individual’s symptoms.
The history should be thorough – documenting the onset and progression of the individual’s disease and the severity of their symptoms, particularly their fatigue and post-exertional malaise.
The workup may include, without limitation, laboratory/blood tests to document: the presence of viruses such as Epstein Barr and Human Herpesvirus-6; bacterial infections, which are thought to trigger or contribute to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis; and elevated cytokine levels commonly found in patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.
Your doctor’s reports should focus on the frequency and severity of your symptoms; their direct observations of you during office visits; and your specific restrictions and limitations that prevent you from working.
Additional Testing Can Help Support Your Claim
Beyond your regular office visits with your treating doctor(s), there are additional testing options that can substantiate your Chronic Fatigue Syndrome diagnosis and symptoms. Additional testing can include:
- Neuropsychological testing can document your cognitive deficits due to CFS;
- Cardiopulmonary exercise testing (CPET) measures post-exertional malaise (PEM) and can objectively determine your capacity for activities and work;
- A Functional Capacity Evaluation (FCE) tests your ability to push, pull, sit, stand, and other physical functions necessary to your occupation. When fatigue is significant, these evaluations can be especially useful in proving how your symptoms affect your ability to work.
Write A Personal Narrative
It is often beneficial to explain how your individual symptoms prevent you from performing your job duties by preparing a detailed, written narrative for the insurance company. In many cases, it is helpful if the narrative addresses all of your symptoms by listing them separately first.
Since many symptoms of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis are subjective in nature, your narrative can also address the severity of your symptoms, as well as any factors that may trigger or exacerbate your symptoms.
Appropriate Treatment is Necessary
Your insurance company will want to see you are receiving appropriate treatment for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. If your insurance company does not believe you are complying with your doctors’ recommendations for treatment, they can use this as justification to deny your claim or terminate your benefits.
Unfortunately, there is no known cure for CFS/ME. Therefore physicians focus treatment on managing or mitigating the underlying symptoms of the disease. Some appropriate treatment options include:
- Lifestyle changes. As fatigue and post-exertional malaise are hallmark symptoms of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, your doctor may recommend: improving your sleep habits; adjusting your daily schedule to take advantage of times when you have more energy; pacing yourself during the day by avoiding physical and cognitive demands when you are not feeling up to it; adjusting your diet (, avoiding caffeine); a graded exercise program; stress management; and properly controlling the light and noise of your surroundings to avoid increasing your symptoms.
- Medications. While no medication can treat all your symptoms, your doctor may prescribe medications such as sleep aids; anti-depressants; anti-anxiety drugs; stimulants; non-steroidal anti-inflammatory drugs; over-the-counter pain relievers; antibiotics or anti-viral medications (if you have high levels of antibodies to certain organisms); and intravenous immunoglobulin. These medications may have side effects, which the insurance company should consider.
- Cognitive Therapy. Your doctor may recommend cognitive behavioral therapy (“CBT”) to mitigate your problems with concentration, focus, attention and processing speed, for example. This type of therapy may also help you cope with your other symptoms as well.
- Alternative Medicine. Your doctor may recommend taking nutritional supplements, acupuncture, yoga or massage therapy.
Because your insurance company can easily use noncompliance and lack of appropriate care as a reason to deny your claim, you should follow your doctors’ advice and treatment plan.
Beware of Insurer Attempts to Characterize Your Disability as a Mental Disorder
Most long term disability group policies limit benefits to two years when the disability is caused or contributed to by a mental illness. Insurance companies frequently use these provisions as a shield because the symptoms of CFS/ME are often similar to symptoms of depression. It is much harder for your insurance company to make this claim when your treating doctor has followed the proper diagnostic criteria and performed the right tests to rule out other conditions.
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis is a serious, and often misunderstood medical condition that may result in total disability. To file a successful long term disability claim, your claim should be supported by sufficient medical evidence and proof of appropriate treatment. Given the subjective nature of many CFS/ME symptoms, this can be difficult to do.
An experienced long term disability attorney can help you navigate the process to get your benefits approved. A long term disability attorney will know how best to substantiate your claim with evidence and testing results. Our disability insurance attorneys are familiar with all the testing that should be included for a chronic fatigue syndrome disability claim or appeal and will refer you for any testing you need.
If you are suffering from Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, or if you have already been denied disability benefits for CFS/ME, our New York long term disability lawyers can help. Call Riemer Hess LLC at (212) 297-0700 for a consultation on your disability case.
Helpful Links and Resources
Institute of Medicine of the National Academies
American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society