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Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Accommodation and Compliance: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

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About Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

ME/CFS is a complex illness and symptoms of ME/CFS may seem similar to many other illnesses. ME/CFS requires three symptoms:
Not being able to participate in routine activities that were possible before becoming ill, such as work, school, social life, and/or personal life, that:

  • Lasts for more than 6 months
  • Is accompanied by fatigue that is:
  • Often serious
  • Just started (not lifelong)
  • Not the result of ongoing activities
  • Not from more than usual effort
  • Not made better by rest

Post-exertional malaise (PEM). Worsening of symptoms after physical, mental, or emotional effort that would not have caused a problem before the illness. Symptom onset can be immediate or delayed for hours or days. This is sometimes referred to as “crashing” by people with ME/CFS.

Unrefreshing sleep. People with ME/CFS may not feel better even after a full night of sleep (e.g., feeling just as tired upon waking up as before going to bed).

In addition, at least one of the following symptoms is also required: Impaired memory or ability to concentrate. People with ME/CFS may have trouble remembering, learning new things, concentrating, or making decisions.

Orthostatic intolerance (symptoms that occur while standing or sitting upright). People with ME/CFS may feel lightheaded or dizzy when standing upright and may even faint.

 

OTHER COMMON SYMPTOMS:

  • Muscle pain
  • Pain in the joints without swelling or redness
  • Headaches of a new type, pattern, or severity
  •  Swollen or tender lymph nodes in the neck or armpit
  • A sore throat that is frequent or recurring
  • Gastrointestinal symptoms
  • Genitourinary symptoms
  • Sensitivity to light, sound, touch, and smell
  • Chills and night sweats
  • Visual disturbances
  • Nausea
  • Allergies or sensitivities to foods, odors, chemicals, or medications

Disease onset can be either gradual or sudden, and the course can be unpredictable and varies by individual. Some individuals report that even everyday activities (e.g., grocery shopping, attending medical appointments) can worsen their symptoms. The effects of ME/CFS can be substantially limiting.

Currently, there are no medications approved specifically for the treatment of ME/CFS. However, healthcare providers can treat the symptoms and comorbid conditions. Techniques to help individuals cope with the disease can also improve their quality of life.

Managing PEM should be considered to limit symptoms. During PEM, other symptoms may get worse or first appear, including difficulty thinking, problems sleeping, sore throat, headaches, feeling dizzy, or severe fatigue. PEM can start immediately after the exertion or be delayed for hours or days. It may take days, weeks, or longer to recover from a crash. Sometimes individuals may not be able to leave their home or even get out of bed during crashes. People with PEM may not always be able to predict what will cause a crash or how long it will last. Practicing pacing strategies to minimize and manage PEM can lead to stabilization or improvements in pain, sleep, fatigue, cognition, and other symptoms. It can also prevent worsening of these symptoms. Pacing activity may improve quality of life considerably and even increase function.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and the Americans with Disabilities Act

The ADA does not contain a list of medical conditions that constitute disabilities. Instead, the ADA has a general definition of disability that each person must meet. A person has a disability if he/she has a physical or mental impairment that substantially limits one or more major life activities, a record of such an impairment, or is regarded as having an impairment. For more information about how to determine whether a person has a disability under the ADA, see How to Determine Whether a Person Has a Disability under the Americans with Disabilities Act Amendments Act (ADAAA).

Accommodating Employees with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

People with ME/CFS may develop some of the limitations discussed below, but seldom develop all of them. Also, the degree of limitation will vary among individuals. Be aware that not all people with ME/CFS will need accommodations to perform their jobs and many others may only need a few accommodations. The following is only a sample of the possibilities available. Numerous other accommodation solutions may exist.

Questions to Consider:

  1. What limitations is the employee experiencing?
  2. How do these limitations affect the employee and the employee’s job performance?
  3. What specific job tasks are problematic as a result of these limitations?
  4. What accommodations are available to reduce or eliminate these problems? Are all possible resources being used to determine possible accommodations?
  5. Once accommodations are in place, would it be useful to meet with the employee to evaluate the effectiveness of the accommodations and to determine whether additional accommodations are needed?
  6. Do supervisory personnel and employees need training?

Accommodation Ideas:

Situations and Solutions:

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