I Know Someone With ME/CFS
Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), chronic fatigue and immune dysfunction syndrome (CFIDS) and by other names, is a complex and debilitating chronic illness with a serious impact on one’s quality of life. It is marked by numerous symptoms including disabling fatigue, problems with information processing and memory, flu-like symptoms, pain in the joints and muscles, dizziness, nausea, sleep disorders and headache.
Strong support from family and friends is very important to people with this debilitating and poorly understood illness as they work to integrate the challenges of ME/CFS into their lives.
The keys to helping a person with ME/CFS are education, communication and emotional support.
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Keep the lines of communication open and listen
Your willingness to listen will help validate and acknowledge the seriousness of the illness. But be cautious about your well-intended comments that may be perceived as insensitive. Instead of saying “I know how you feel. I have a lot of the same symptoms as you,” keep your comments constructive and caring such as “I’m sorry that you’re feeling so poorly.” And never say “I’m tired all the time too.” ME/CFS is not about being tired. Learn the most common symptoms and remember that just because it is unseen does not minimize its debilitating effect.
Be as understanding and kind as you can, reassuring them of your love and support. Try to continue to enjoy activities together, modifying them as necessary to create a new “normal” with your friend or partner. You can also show you care by helping in tangible ways, like running errands, balancing the checkbook and walking the dog.
Finally, it’s important to recognize that ME/CFS also presents challenges and brings changes to your life. Take time for yourself and give yourself credit for being there for someone who needs and appreciates your love and support.
- For Those Who Care Fact Sheet (pdf)
Resources for patients that may help your understanding:
- Tips for Parents
- Managing your Energy Envelope
- Treatment FYI: Controlling Pain
- A Mother’s story
- Tips for Daily Life
- Taking the Caregiver into Account