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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
- 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 definitive list of medical conditions that constitute disabilities. Instead, the ADA defines a person with a disability as someone who (1) has a physical or mental impairment that substantially limits one or more "major life activities," (2) has a record of such an impairment, or (3) is regarded as having such 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:
- What limitations is the employee experiencing?
- How do these limitations affect the employee and the employee’s job performance?
- What specific job tasks are problematic as a result of these limitations?
- What accommodations are available to reduce or eliminate these problems? Are all possible resources being used to determine possible accommodations?
- 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?
- Do supervisory personnel and employees need training?
Situations and Solutions:
The following situations and solutions are real-life examples of accommodations that were made by JAN customers. Because accommodations are made on a case-by-case basis, these examples may not be effective for every workplace but give you an idea about the types of accommodations that are possible.
A customer service representative with chronic fatigue syndrome and memory and concentration problems had difficulty answering some customer questions.
She was accommodated with written materials to help her remember information and a private office to reduce distractions.
A teacher with chronic fatigue syndrome had difficulty meeting the physical demands of her job and was exhausted by early afternoon.
She was provided with a teacher’s aid, her off-hour was moved to the afternoon, and she was excused from afternoon recess duty.
A student with chronic fatigue syndrome had difficulty keeping up with class notes.
He was accommodated with a laptop computer to use in class.
An employee with sickle cell anemia has disclosed that they are experiencing limitations due to chronic fatigue.
The individual has noticed that the quality of her work suffers near the end of their shift and is requesting accommodations to help with this. The employer agrees to modify the individual’s schedule so that she has a 1-2 hour break in the middle of the shift as an accommodation so that the individual can rest before resuming the work shift. To accomplish this, the employer extends the individual’s shift end-time so the individual works a normal amount of hours despite this long break.
A flight attendant with chronic fatigue syndrome was missing a lot of work due to fatigue.
Her doctor recommended that she reduce the amount of traveling she was doing. She wanted to continue working full-time so requested reassignment to an office job.
A therapist with chronic fatigue had difficulty maintaining the stamina needed to work full time
Part of the problem was that she had a difficult commute to and from work every day. She asked her employer if she could telework two times a week and do her paperwork on those days. Her employer had never had an employee telework before so decided to allow it on a trial basis to determine whether it would work. After trying it for a month, the employer agreed to allow the employee to continue teleworking.
A school psychologist with chronic fatigue syndrome was having difficulty working at full production.
She was allowed to schedule appointments in the morning, which gave her uninterrupted time in the afternoon to complete paperwork. She was also allowed to schedule several short rest breaks throughout the day and use of sick leave as needed.
An operating-room nurse with chronic fatigue syndrome had difficulty rotating schedules.
She was accommodated with a permanent day schedule.
A design engineer with chronic fatigue syndrome had difficulty working full-time.
He was allowed to work-at-home three days a week.
A daycare director with chronic fatigue syndrome had difficulty getting to work on time and maintaining a full-time schedule.
She was allowed a later start time and a part-time schedule.
A social worker with chronic fatigue syndrome experienced headaches and photosensitivity.
Accommodations included changing the lighting in her workstation from fluorescent lighting to task lighting, adding a glare guard to her computer monitor, providing window blinds, and implementing other workstation changes to enhance ergonomics.