For more than 2.5 million North Americans, the exhaustion, pain and brain fog of chronic fatigue syndrome are an everyday challenge. Now, a new Institute of Medicine report suggests a new name and a better way to diagnose the condition, also known as myalgic encephalomyelitis.
The new designation, systemic exertion intolerance disease, or SEID, describes deep, lasting fatigue brought on by short periods of activity, a leading symptom. The IOM said that the new name might help this life-altering illness get the respect it deserves from medical professionals and from friends and family members of those with SEID. Doctors should take the illness seriously, and as one panel member told the media, “This is not a figment of [the patient’s] imagination.” (CFS once was dismissed as “yuppie flu.”) The IOM then proposed new criteria for diagnosing the condition, starting with:
• Unrefreshing sleep, post-activity exhaustion and ongoing fatigue that has interfered with your job, family, social life or schooling for at least six months;
• Ongoing problems with memory and concentration;
• A worsening of symptoms when you stand up from lying down.
So here’s how you can help yourself, or someone you love:
Do what it takes to get better sleep. Anything that improves sleep can recharge your batteries and help diminish other symptoms, such as pain. Start with the basics: a regular sleep schedule, a relaxing bedtime routine, no caffeine within two to three hours (or more) of sleep and a cool, dark bedroom. If your sleep is disrupted or continues to be unrefreshing, talk with a sleep specialist.
Be smart about activity. Recent British research suggests that a “graded” exercise program — one that slowly increases the intensity and length of workouts — can reduce fatigue and improve daily functioning for some people. Physical activity can help you out in other ways, too, by improving your sleep, mental focus, mood and balance. But don’t overdo it. Exercising too long or just going to the supermarket or making dinner when you’re not feeling well could trigger a relapse.
If you feel up for activity, start with just a few minutes of easy exercise (like a two- to five-minute walk). Follow up with plenty of rest (a couple of days if you need it) before you do it again. Build up very gradually ... but only if and when you’re ready. You also could consider going to a rehabilitation specialist in your area who can set up a personalized graded exercise program.
Control pain. Pain in one part of your body — like a migraine headache or an arthritic joint — could make all-over muscle and joint pain worse. Work with your doctor or with a pain specialist to find the best, safest ways to ease pain. Acupuncture, massage and yoga may help, too.
Find emotional support, within yourself and in your world. It’s not all in your head, but it still can be an emotional rollercoaster. Friends and family might feel frustrated by your limitations or be less supportive than you’d like. You might feel frustrated, depressed or stressed-out. Try an online or in-person support group (www.dailystrength.org, part of our RealAge and Sharecare family of sites, can help you find what you need); short-term cognitive behavior therapy, such as learning a stress-reduction technique aimed at helping you solve problems and cope, may help; so may building a circle of reliable friends. They all can help you find a bit of serenity.
Be careful about alternative therapies. Could living in a mold-free environment, taking supplements or trying an experimental medication in a clinical trial improve your symptoms? Maybe and maybe not. The Internet and magazine articles are full of success stories from people whose symptoms cleared up thanks to unconventional approaches. SEID is a complex condition that has not yet been thoroughly researched. Examine all the evidence and make sure you understand the risks to your health and your wallet (that’s a big red flag), as well as purported benefits, before considering something new; and always talk with your doctor first.