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It's not often that two diseases share the same International Awareness Day, but May 12th is the day to spotlight both myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia. These diseases often co-occur, and have many commonalities: they're medically unexplained, predominantly occur in women, have overlapping symptoms and risk factors, and require careful management for better daily living.
Myalgic encephalomyelitis/chronic fatigue syndrome is a complex illness that is often disabling and is marked heavily by overwhelming fatigue that isn't improved with rest. Both physical and mental activities can worsen this, and someone with ME/CFS might be confined to bed. They might not look physically ill, but this disease causes serious issues with daily functioning:
ME/CFS has a significant impact on public health, although it often goes unacknowledged due to lack of awareness:
The difficulty of diagnosing ME/CFS and uncertainty about its causes has led to a lack of understanding of the disease from many patients and even medical professionals.
Also a complex illness of uncertain origin, fibromyalgia affects 4 million U.S. adults, about 2 percent of the adult population. Its symptoms manifest as both mental and physical problems:
Whether you have these conditions or not, learning about them can help you spot their symptoms in friends and family, and your encouragement and knowledge may cause an undiagnosed loved one to get the help they need. Have conversations with friends and family about these illnesses, especially with someone who's experiencing symptoms that may indicate they have ME/CFS or fibromyalgia.
If a loved one has or may have one of these conditions, learn about the experiences of others living with them. Read about how to manage and treat these illnesses. Learn about job and school accommodations to make living with these conditions easier.
Wear blue on May 12th to show your support for patients with ME/CFS and fibromyalgia. Post about it on social media, sharing your personal story with these illnesses or articles about them.
If a loved one has or may have one of these conditions, offer aid in any way possible. Help them speak up for better medical outcomes, more accurate diagnoses and better treatments. Assist them with daily tasks that have become difficult for them, or offer them transportation for medical visits or daily errands.
ME/CFS and fibromyalgia can be extremely isolating illnesses during a normal period, and even more so in a time when social distancing measures are practiced. When you can't physically connect with your loved ones, try to spend time together online, making use of teleconferencing platforms and other media. You can watch movies, shows, or sports together; play online video games (or tabletop games over a platform like Discord); hold online trivia or karaoke contests; or just have long video chats with each other. Staying in contact is essential for the well-being of anyone with a disease.
Every patient with ME/CFS and fibromyalgia has a different experience. Communicate with a loved one about personal limits on activity as well the need for assistance in daily functioning. Instances of post-exertional malaise or flare-ups of fibromyalgia pain can happen with little to no warning or regularity, so always keep communication open about current needs and how to adapt to meet them.