Living with Chronic Fatigue Syndrome (CFS), also known as myalgic encephalomyelitis (ME), can be an isolating and challenging journey.  The debilitating symptoms can impact every aspect of life, making even simple tasks feel like insurmountable obstacles.  For many individuals with ME/CFS, maintaining employment becomes impossible due to the severity of their condition.  In such cases, pursuing long-term disability benefits may offer essential financial support. However, navigating the complexities of the application process can be daunting.  This guide aims to shed light on qualifying for long-term disability benefits due to ME/CFS, addressing the symptoms, current scientific understanding, and strategies for proving disability.

Understanding Chronic Fatigue Syndrome

ME/CFS is a complex and poorly understood condition characterized by persistent fatigue that cannot be explained by any underlying medical condition.  The defining symptom is a debilitating fatigue that does not improve with rest and intensifies with any physical or mental exertion.  This condition is commonly known as post-exertional malaise.  Beyond fatigue, individuals with ME/CFS may experience a range of symptoms, including:

  • Unrefreshing sleep
  • Muscle and joint pain
  • Cognitive difficulties (often referred to as “brain fog”)
  • Headaches
  • Sore throat
  • Swollen lymph nodes
  • Sensitivity to light and noise
  • Digestive issues

The exact cause of CFS remains elusive.  However, factors like viral infections, immune system dysfunction, hormonal imbalances, and genetic predispositions are implicated.  It’s essential to recognize that ME/CFS is a legitimate medical condition that significantly impairs a person’s ability to function in daily life.

Chronic Fatigue Syndrome, Fibromyalgia, or Both?

ME/CFS shares many of the same characteristics of fibromyalgia, so much so that the terms are sometimes used interchangeably by disability insurers.  Both conditions cause fatigue and widespread pain, accompanied by sleep, memory, and mood issues.  Both conditions are notoriously difficult to prove due to a lack of abnormal test results or imaging studies.  Moreover, the conditions often occur together.  Studies have placed the overlap of ME/CFS and fibromyalgia at somewhere between 20 and 70 percent.

Scientists now believe that ME/CFS and fibromyalgia are both caused by an underlying nervous system disorder called central sensitization.  Central sensitization is a condition where the central nervous system becomes overly responsive, amplifying pain signals and causing increased sensitivity to pain and touch, even without a direct injury or stimulus.  Given the similarities between the two conditions, physicians should evaluate patients suffering from chronic fatigue syndrome for fibromyalgia, and vice versa.

Proving Disability Due to Chronic Fatigue Syndrome

Proving disability due to chronic fatigue syndrome presents unique challenges, primarily because there are no specific blood tests or imaging studies that definitively diagnose the condition.  Unlike conditions with clear biomarkers, an ME/CFS diagnosis relies on clinical assessment, symptomatology, and exclusion of other medical explanations for the symptoms, such as sleep disorders.

The lack of objective biomarkers often leads to skepticism from healthcare providers, insurers, and disability adjudicators.  To establish disability, individuals must provide comprehensive medical documentation, including detailed records of symptoms, functional limitations, and efforts made to manage the condition.  A symptom diary may be helpful, since courts have recognized that, in the absence of objective testing, such diaries can provide objective evidence of disability.  See, e.g., Creel v. Wachovia Corp., No. 08-10961, 2009 U.S. App. LEXIS 1733, at *26 n.21 (11th Cir. Jan. 27, 2009.) (“Though the diary incorporates subjective observations, we find it to be ‘objective proof’ since it is a form of evidence commonly used by physicians treating potential migraine patients, similar to how other doctors utilize x-rays or test results.”)

The Role of CPET Testing

Two-day cardiopulmonary exercise testing (CPET) has emerged as a valuable tool in testing for the presence of chronic fatigue syndrome. CPET objectively measures an individual’s physiological response to exercise, assessing parameters such as oxygen consumption, carbon dioxide production, and heart rate.  In ME/CFS, CPET can reveal abnormalities in aerobic metabolism, exercise intolerance, and post-exertional malaise that are not evident during routine physical examinations or basic exercise stress tests.

One common characteristic of PEM is delayed ability to return to prior levels of physical capacity after physical exertion.  One way ME/CFS patients can demonstrate this delayed lack of recovery is to undergo two CPETs 24 hours apart.  The first CPET assesses the current level of function and elicits illness relapse, while the second CPET measures changes in exercise capacity due to the challenge.

A decline in performance observed during two-day CPET can provide tangible evidence of functional limitations and validate the debilitating nature of ME/CFS.  These findings can strengthen disability claims by objectively demonstrating the physiological basis for the individual’s symptoms and limitations.  However, a two-day CPET is not necessary to diagnose CFS, and it could worsen the patient’s condition.  Further, a two-day CPET is not likely to covered by health insurance due to lack of medical necessity.

In combination with thorough clinical evaluations and documentation of symptomatology, two-day CPET results can enhance the credibility of disability claims related to ME/CFS. However, it’s essential to recognize that CPET is just one component of a comprehensive disability evaluation, and additional medical evidence and documentation are often necessary to support disability claims effectively.

How Courts Have Treated CPET Testing

At least one court has found CPET testing to be decisive in a chronic fatigue syndrome case.  In Vastag v. Prudential Ins. Co. of Am., CV156197KSHCLW, 2018 WL 2455921 (D.N.J. May 31, 2018), the court ruled that the insurance company abused its discretion by denying disability benefits to a Washington Post reporter with severe chronic fatigue syndrome, emphasizing that the CPET results clearly demonstrated his inability to function normally, let alone perform his job duties.

However, other courts have upheld the denial of disability benefits for chronic fatigue syndrome patients, even when CPET results indicated disability.  See, e.g., W. v. Unum Life Ins. Co. of Am., CV 16-9527-JFW (ASX), 2018 WL 6071090, at *15 (C.D. Cal. July 3, 2018), aff’d, 798 Fed. Appx. 154 (9th Cir. 2020); Nagy v. Hartford Life & Accident Ins. Co., 16-CV-05309-HSG, 2018 WL 2183269, at *11 (N.D. Cal. May 11, 2018), aff’d, 800 Fed. Appx. 555 (9th Cir. 2020).  Thus, while CPET testing may be useful for proving the existence of chronic fatigue syndrome, claimants should still pursue traditional evidence in support of disability, such as treating physician’s opinions.

Conclusion

Living with Chronic Fatigue Syndrome presents numerous challenges, including the inability to maintain employment due to debilitating symptoms.  Qualifying for long-term disability benefits can provide essential financial support for individuals with ME/CFS who are unable to work.  By understanding the symptoms of ME/CFS, documenting your medical condition effectively, and navigating the application process with diligence and persistence, you can increase your chances of securing the disability benefits you deserve.  Remember, you’re not alone in this journey, and advocating for your rights is a key step towards accessing the support you need to manage ME/CFS and improve your quality of life.

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