Chronic fatigue syndrome, also known as myalgic encephalomyelitis (or CFS, ME, or ME/CFS for short) is a debilitating illness that affects approximately 500,000 Canadians. Some people who suffer from chronic fatigue continue working. But for others, the symptoms are too severe and may result in a claim for long term disability insurance. Unfortunately, many ME/CFS disability claims are denied. This article will address applying for long term disability benefits, strategies to increase the chances of having your claim approved, and what to do if your claim is denied.
What is Chronic Fatigue Syndrome / Myalgic Encephalomyelitis?
Chronic fatigue impairs the ability to carry out normal activities because of extreme tiredness. This fatigue can be both physical and cognitive. ME/CFS symptoms often include:
- persistent or recurring fatigue that interferes with normal day-to-day activities and is not relieved by rest
- malaise or not feeling well after physical or mental activity
- pain and headaches
- unrefreshed sleep
- cognitive impairments, sometimes described as “brain fog”
Nervous system and immune system responses may also be present, and can include tender lymph nodes, gastrointestinal difficulties, atypical heartrate, and light or sound sensitivity. In fact, the World Health Organization has characterized ME/CFS as a neurological disease since 1969.
Chronic fatigue is sometimes associated with depression and anxiety, but this does not mean that myalgic encephalomyelitis is “all in your head” as some skeptics (and some insurance adjusters) may believe.
Chronic fatigue syndrome can be confused with fibromyalgia. Some symptoms may overlap, but they are distinct medical conditions. In ME/CFS, the primary symptoms are fatigue and malaise after physical or mental activity, whereas in fibromyalgia the main symptom is pain.
What Causes Chronic Fatigue Syndrome?
The cause of ME/CFS is not known, but research indicates multiple factors can play a role, including environmental, viral, microbial, social, physiological, and psychological. Up to 75% of people with chronic fatigue syndrome first experience symptoms after a viral infection. Epstein-Bar, for example, is one of the most common human viruses. Multiple studies in patients with ME/CFS have suggested an altered cellular immunity response triggered by the virus. Research is currently ongoing to investigate whether the COVID-19 virus may also be linked to chronic fatigue, especially for those with long-COVID.
Diagnosing Chronic Fatigue Syndrome
Being diagnosed with myalgic encephalomyelitis can be challenging. There are currently no reliable diagnostic tests available. Many symptoms overlap with symptoms of other conditions, such as other neurological disorders, autoimmune disease, and endocrine disorders. In Canada, a diagnosis of ME/CFS is typically only made after ruling out all other possible causes of the symptoms experienced. In the USA, the Centre for Disease Control requires three core characteristics of ME/CFS that must be present for diagnosis to occur, in addition to one of two secondary symptoms.
First, there must be a significant reduction in your ability to do things you could do before, and it does not go away despite rest or sleep.
Second, symptoms of ME/CFS get worse after physical or mental activities. This is often called post-exertional malaise, or PEM.
The third requirement is some issue with sleep. Typically sleep does not provide the same level of recovery as the average person, and there may also be trouble getting to sleep or staying asleep.
Finally, a ME/CFS requires either: cognitive issues, such as difficulties with thinking clearly or processing thoughts, trouble remembering things, or executive functioning problems; or, worsening symptoms while sitting or standing upright, often called orthostatic intolerance.
Treatment of Chronic Fatigue Syndrome
Unfortunately, treating chronic fatigue syndrome can be very challenging, and there is currently no cure.
Treatment tends to focus on managing the symptoms by pacing activity levels, medications, psychotherapy (especially when depression and anxiety are factors), specialised exercise programs, and alternative therapies.
When ME/CFS Impacts Employment
Some people with chronic fatigue syndrome continue to work, with or without accommodations. In Ontario, employers are required to accommodate their employee’s medical restrictions and limitations up the point of undue hardship. This may include additional breaks, assistive devices, or working from home, among others.
Some people who suffer ME/CFS cannot work at all. In those circumstances, short or long term disability insurance may be available to provide financial support.
Applying For Disability Insurance
Many Canadians have short term disability and/or long term disability insurance coverage through their workplace. Others, often professionals and self employed people, have purchased an individual policy to provide a source of income in the event of an injury or illness that prevents them from working.
In theory, submitting a disability claim for ME/CFS is straightforward. You submit a form with some basic information about yourself and your medical issues; your primary care provider submits a form elaborating on the diagnosis, prognosis, and severity of symptoms; and, in the case of group policies, your employer submits a form as well. An insurance adjuster reviews the information provided and conducts a telephone interview with you. If everything checks out, the claim should be approved and you will start receiving benefits.
In practice, however, submitting a disability claim for chronic fatigue syndrome can be challenging, and many claims are denied.
Challenges When Applying for Disability Insurance Due To ME/CFS
The first problem is often lack of diagnosis. Although disability claims are supposed to be based on your level of function, the lack of a diagnosis will cause the insurance company some concern. Because ME/CFS is typically diagnosed by excluding all other possible conditions that could explain the symptoms, it can take months or years before a formal diagnosis. If you are unable to work, you can’t wait on a diagnosis for financial support.
Second, even with a diagnosis, you must demonstrate the functional limitations of chronic fatigue syndrome prevent you from completing the essential tasks of your employment. The nature of ME/CFS is that these symptoms vary from person to person, and even with the same individual severity often varies day to day. Claims arising from vague or inconsistent symptoms are more likely to be denied.
Lastly, ME/CFS is not an “objective” illness or injury, the way a bone fracture or cancer is. This does not mean it is any less disabling, but it does make it harder to prove you cannot work. Remember, insurance adjusters do not approve every claim. It is easier for them to deny the claims with less objective evidence.
How to be approved for disability benefits caused by Chronic Fatigue
There are three things you can do to increase your chances of your claim for ME/CFS being approved:
- Be specific
- Provide medical evidence
- Be open, candid, and truthful
First, be specific about your restrictions and limitations. When submitting forms and when speaking with the insurance representative, try to quantify whenever possible. For example, stating “I cannot sit in on one position for more than 30 minutes, walk more than 15 minutes, or read more than 10 minutes before I have to rest for one hour” is much more precise than “I am fatigued all the time.” Even better would be link your limitations to your job duties. For example: “My job requires me to stand at a machine from 7 a.m. to 3 p.m with two 15 minute breaks and a 30 minute lunch. I am unable to stand continuously for more than 30 minutes. Even with breaks, I cannot stand or walk more than 1.5 hours total per day”. Or for an office worker: “My job is sedentary but fast paced. I am required to read, type, analyze data, take calls, and manage multiple calendars. After 15 minutes, I cannot concentrate and I start making mistakes. After 30 minutes, I cannot focus at all. When I am not in the office, I have a hard time keeping track of the plot on TV shows, and I cannot read for more than 15 minutes before I forget what I just read.”
Second, provide as much medical evidence as reasonably possible. Your insurance company will request that your physician(s) complete forms and provide medical records. Be sure the insurer knows all of your treatment providers (which may include family physician, rheumatologist, psychiatrist, group therapy, chiropractor, etcetera), and all the medications you are taking. When deciding whether to pay disability insurance benefits for chronic fatigue syndrome, your insurance company will carefully examine the medical records, and cross reference those against what you are telling them.
Which leads to the third point: be open, candid, and truthful with both your treatment providers and the insurer. Inconsistencies can lead to claim denies. This is particularly important for invisible conditions such as ME/CFS, where there is no objective test that can accurately determine your level of function and impairments.
Keep in mind insurance companies sometimes conduct surveillance and other investigations. This may include hiring a private investigator to follow you for several days. If the insurance company does not do surveillance, the adjuster will at least search for you on Google, Linkedin, Facebook, Instagram, and other social media, so be mindful of your online activities.
If approved, benefits will start after the waiting period. During the waiting period, and while on claim, you must continue receiving reasonable and customary care for your medical condition on an ongoing basis.
If STD or LTD benefits are denied, either after the initial application or after a period of benefit payments, you will be provided with a letter explaining the decision and information about appealing.
Your Rights If Disability Insurance Claim is Denied
A denied STD or LTD claim is not the end. You have rights, including:
- The right to consult with a long term disability lawyer, free of charge
- The right to appeal the insurance company’s decision
- The right to take further legal action
Most long term disability lawyers do not charge any legal fees for the initial consultation. The lawyer can explain your options in detail, which typically includes appealing or legal action. In the event of legal action, long term disability lawyers usually do not charge any fees unless successful.
About The Author
Michael Jordan is a long term disability lawyer with more than 17 years experience litigating all types of insurance claims. He is a founding partner of the Bay Street firm Jordan Honickman Barristers. Michael represents clients across all of Ontario, with satellite offices in Ottawa and London.
Direct Cell: 416-460-6823