Accommodating People with Chronic Fatigue Syndrome Job Accommodation Network A service of the Office of Disability Employment Policy of the U.S. Department of Labor By Linda Carter Batiste, MS, and Beth Loy, Ph.D. Preface Chronic fatigue syndrome (CFS) affects an estimated 75 to 265 people per 100,000 people according to a recent study by the Centers for Disease Control and Prevention (CDC). These statistics, coupled with the Americans with Disabilities Act (ADA), show why knowing about workplace accommodations for people with CFS is important. When considering accommodations for people with CFS, the accommodation process must be conducted on a case-by-case basis. Symptoms caused by CFS vary so when determining effective accommodations, the person's individual abilities and limitations should be considered and problematic job tasks must be identified. Therefore, the person with CFS should be involved in the accommodation process. Not all people with CFS will need accommodations to perform their jobs and many others may need only a few accommodations. For those who need accommodation, the following pages provide basic information about common limitations, symptoms, useful questions to consider, and accommodation possibilities. The following is only a sample of possibilities to consider; numerous other solutions and considerations may exist. Also included in this publication is a list of resources for additional information. CHRONIC FATIGUE SYNDROME (CFS) The following information regarding CFS was edited from several sources, including many of the resources listed in the resource section of this publication. The information is not intended to be medical advice. If medical advice is needed, appropriate medical professionals should be consulted. What is CFS? CFS, also known as chronic fatigue and immune dysfunction syndrome (CFIDS), is a disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. Persons with CFS must often function at a substantially lower level of activity than they were capable of before the onset of illness. In addition to these key defining characteristics, patients report various nonspecific symptoms, including weakness, muscle pain, impaired memory and/or mental concentration, insomnia, and post-exertional fatigue lasting more than 24 hours. In some cases, CFS can persist for years. What are the symptoms of CFS? Clinically evaluated, unexplained chronic fatigue can be classified as CFS if 1) unexplained, persistent, or relapsing fatigue exists and 2) four or more of the following symptoms are present and have persisted for six or more consecutive months: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern, or severity; unrefreshing and/or interrupted sleep; post-exertional malaise lasting more that 24 hours; and sensitivity to odors, noise, bright lights, medications, heat, and various foods. In addition to the primary defining symptoms of CFS, some CFS patients have reported a number of other symptoms. They include abdominal pain, alcohol intolerance, bloating, chest pain, chronic cough, diarrhea, dizziness, dry eyes or mouth, earaches, irregularheartbeat, jaw pain, morning stiffness, nausea, night sweats, shortness of breath, skin sensations, tingling sensations, and weight loss. A majority of CFS patients also report mild to moderate symptoms of anxiety or depression. Several studies report a high rate of coexistingpsychiatric diagnoses in CFS patients, greater than that found in patients with other medical illnesses such as rheumatoid arthritis, multiple sclerosis, and neuromuscular disease. Typically stabilizing and then persisting chronically, most patients partially recover, some fully recover, and others recover and relapse. The severity of CFS symptoms varies broadly among individuals. What causes CFS? The cause or causes of CFS have not been identified and no specific diagnostic tests are available. Moreover, since many illnesses have incapacitating fatigue as a symptom, care must be taken to exclude other known and often treatable conditions before a diagnosis of CFS is made. A number of illnesses have been described that have a similar spectrum of symptoms to CFS. These include fibromyalgia syndrome, Lyme borreliosis, mild systemic lupus erythematosus (SLE), myalgic encephalomyelitis, neurasthenia, multiple chemical sensitivity, and chronic mononucleosis. Although these illnesses may be present with a primary symptom other than fatigue, chronic fatigue is commonly associated with all of them. CFS often begins abruptly; however, sometimes the onset is gradual. In about one-third of cases, the sudden onset follows a respiratory, gastrointestinal, or other acute infection with flu-like symptoms, including mononucleosis. Other cases develop after emotional or physical traumas such as bereavement or surgery. How is CFS diagnosed? CFS is difficult to diagnose. There is no laboratory test or simple clinical marker for CFS. The diagnosis of CFS requires a thorough evaluation by a physician to rule out diseases and conditions with similar symptoms. This evaluation typically requires medical history and physical examination as well as laboratory tests. Once other diseases are ruled out, the physician can determine whether the person meets the criteria for CFS. How is CFS treated? There is no proven cure for CFS, although lifestyle modifications may make symptoms more manageable. The treatment of CFS focuses on symptom management, i.e., aspirin and ibuprofen for pain and headache relief. Some individuals with CFS benefit from a healthy diet; antidepressant, antianxiety, and sleep disorder drugs, such as amitriptyline and doxepin; and behavioral therapy. In addition, relaxation and stress reduction techniques may be beneficial, including deep breathing exercises, muscle relaxation techniques, meditation, hypnosis, biofeedback, and massage therapy. QUESTIONS TO CONSIDER WHEN DETERMINING ACCOMMODATIONS What symptoms or limitations is the individual with CFS experiencing? How do these symptoms or limitations affect the person and the person's job performance? What specific job tasks are problematic as a result of these symptoms and limitations? What accommodations are available to reduce or eliminate these problems? Are all possible resources being used to determine possible accommodations? Has the employee with CFS been consulted regarding possible accommodations? Once accommodations are in place, would it be useful to meet with the person with CFS to evaluate the effectiveness of the accommodations and to determine whether additional accommodations are needed? Do supervisory personnel and employees need training regarding CFS, other disability areas, or the Americans with Disabilities Act? ACCOMMODATION CONSIDERATIONS FOR PEOPLE WITH CFS (Note: People with CFS will develop some of these limitations/symptoms, but seldom develop all of them. Limitations will vary among individuals. Also note that not all people who have CFS will need accommodations to perform their jobs and many others may need only a few accommodations. The following is only a sample of the possibilities available. Numerous other accommodation solutions exist as well.) Concentration Issues: Provide written job instructions when possible Prioritize job assignments and provide more structure Allow flexible work hours and allow a self-pace workload Allow periodic rest periods to reorient Provide memory aids, such as schedulers or organizers Minimize distractions Reduce job stress Depression and Anxiety: Reduce distractions in work environment Provide to-do lists and written instructions Remind employee of important deadlines and meetings Allow time off for counseling Provide clear expectations of responsibilities and consequences Provide sensitivity training to co-workers Allow breaks to use stress management techniques Develop strategies to deal with work problems before they arise Allow telephone calls during work hours to doctors and others for support Provide information on counseling and employee assistance programs Fatigue/Weakness: Reduce or eliminate physical exertion and workplace stress Schedule periodic rest breaks away from the workstation Allow a flexible work schedule and flexible use of leave time Allow work from home Implement ergonomic workstation design Provide a scooter or other mobility aid if walking cannot be reduced Migraine Headaches: Provide task lighting Eliminate fluorescent lighting Use computer monitor glare guards Reduce noise with sound absorbent baffles/partitions, environmental sound machines, and headsets Provide alternate work space to reduce visual and auditory distractions Implement a "fragrance-free" workplace policy Provide air purification devices Allow flexible work hours Allow periodic rest breaks Allow work from home Photosensitivity: Minimize outdoor activities between the peak hours of 10:00 am and 4:00 pm Avoid reflective surfaces such as sand, snow, and concrete Provide clothing to block UV rays Provide "waterproof" sun-protective agents such as sunblocks or sunscreens Install low wattage overhead lights Provide task lighting Replace fluorescent lighting with full spectrum or natural lighting Eliminate blinking and flickering lights Install adjustable window blinds and light filters Sleep Disorder: Allow flexible work hours Allow frequent breaks Allow work from home Temperature Sensitivity: Modify work-site temperature and maintain the ventilation system Modify dress code Use fan/air-conditioner or heater at the workstation and redirect vents Allow flexible scheduling and work from home during extremely hot or cold weather Provide an office with separate temperature control PRODUCTS There are numerous products that can be used to accommodate people with limitations. JAN's Searchable Online Accommodation Resource at <http://www.jan.wvu.edu/soar> is designed to let users explore various accommodation options. Many product vendor lists are accessible through this system; however, JAN provides these lists and many more that are not available on the Web site upon request. Contact JAN directly if you have specific accommodation situations, are looking for products, need vendor information, or are seeking a referral. EXAMPLE ACCOMMODATIONS FOR PEOPLE WITH CFS A customer service representative with chronic fatigue syndrome and memory and concentration problems had difficulty answering customer questions. She was accommodated with written materials to help her remember information and a private office to reduce distractions in the work environment. A design engineer with chronic fatigue syndrome had difficulty working fulltime. He was allowed to work-at-home three days a week. 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 operating-room nurse with chronic fatigue syndrome had difficulty rotating schedules. She was accommodated with a permanent day schedule. 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 daycare director with chronic fatigue syndrome had difficulty getting to work on time and maintaining a fulltime schedule. She was allowed a later start time and a part-time schedule. 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 fulltime so requested reassignment to an office job. 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. 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.