Working with Chronic Fatigue Syndrome & Myalgic Encephalomyelitis

Working-with-ME-CFS

By Karen Lee Richards*

Many people with mild cases of Chronic Fatigue Syndrome & Myalgic Encephalomyelitis (ME/CFS) are able to continue working either full or part time. Others find that the fatigue and cognitive problems are so severe, continuing to work is impossible. When that happens, it may be necessary to apply for disability.

While working when you have ME/CFS is not easy, it does offer some important benefits if you’re able to do it. In addition to the obvious financial benefits, working can contribute to feelings of self-worth, provide opportunities for social interaction, offer intellectual challenges and even help distract your mind from your illness for periods of time as you focus on your job tasks.

In most cases, there are modifications that can be made to your job, schedule or workspace that can improve your ability to continue working and increase your productivity. According to the Americans with Disabilities Act (ADA), most employers are obligated to make “reasonable accommodations” for people with disabilities.

The following list of possible modifications for people with ME/CFS is provided by the U.S. Department of Labor’s Job Accommodation Network. You can use this list when discussing suggested modifications with your employer.

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Concentration Issues:
  • Provide written job instructions when possible
  • Prioritize job assignments & provide more structure
  • Allow flexible work hours & allow a self-pace workload
  • Allow periodic rest periods to reorient
  • Provide memory aids, such as schedulers or organizers
  • Minimize distractions
  • Reduce job stress

Photo Sensitivity:

  • 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

Migraine Headaches:

  • Provide task lighting
  • Eliminate fluorescent lighting
  • Use computer monitor glare guards
  • Reduce noise with sound absorbent baffles/partitions, environmental sound machines, & headsets
  • Provide alternate work space to reduce visual & auditory distractions
  • Implement a “fragrance-free” workplace policy
  • Provide air purification devices
  • Allow flexible work hours & work from home
  • Allow periodic rest breaks

Sleep Disorder:

  • Allow flexible work hours & frequent breaks
  • Allow work from home
Fatigue/Weakness:
  • Reduce or eliminate physical exertion & workplace stress
  • Schedule periodic rest breaks away from the workstation
  • Allow a flexible work schedule & 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

Depression & Anxiety:

  • Reduce distractions in work environment
  • Provide to-do lists & written instructions
  • Remind employee of important deadlines & meetings
  • Allow time off for counseling
  • Provide clear expectations of responsibilities & 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 & others for support
  • Provide information on counseling & employee assistance programs

Temperature Sensitivity:

  • Modify work-site temperature & maintain the ventilation system
  • Modify dress code
  • Use fan/air-conditioner or heater at the workstation & redirect vents
  • Allow flexible scheduling & work from home during extremely hot or cold weather
  • Provide an office with separate temperature control

For answers to the most frequently asked questions about your rights under the ADA, read: Working with Fibromyalgia or ME/CFS – Your Rights Under the ADA

* Karen Lee Richards is ProHealth’s Editor-in-Chief. A fibromyalgia patient herself, she co-founded the nonprofit organization now known as the National Fibromyalgia Association (NFA) and served as its vice-president for eight years. She was also the executive editor of Fibromyalgia AWARE, the very first full-color, glossy magazine devoted to FM and other invisible illnesses.  After leaving the NFA, Karen served as the Guide to Fibromyalgia and Chronic Fatigue Syndrome for the New York Times website About.com, and then for eight years as the Chronic Pain Health Guide for The HealthCentral Network.

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