Bottom Line: Experts may have revolutionized treatment, but the rest of the medical community is still catching up
Unless you’ve been fortunate enough to team up with a hotshot physician and researcher like Utah’s Lucinda Bateman, MD, the answer to the question above is probably a resounding “Yes!”
Chronic fatigue syndrome, with symptoms including intense fatigue, poor sleep, difficulty concentrating, headaches and muscle and joint pain, has stumped doctors for over 30 years.
Largely because so little has been known about it, most physicians have written off patients’ symptoms as being caused by depression or a lack of exercise. As a consequence, standard treatment has been to prescribe antidepressants and increasing amounts of exercise to “re-energize” patients. But patients have found that this treatment not only doesn’t help, it can make things worse! Antidepressants don’t do much, and engaging in an exercise program—a strategy that’s successful with other fatigue-causing conditions such as fibromyalgia—often leads to greater exhaustion, not less.
Fortunately, things have begun to change. The Institute of Medicine empaneled an expert group of doctors and researchers to establish diagnostic guidelines and recommendations and the National Institutes of Health has launched a multicenter research collaborative. Researchers from universities across the country have already found one possible explanation for the failure of exercise to help: Exercise prompts a community of microorganisms in the gut to move out of the gut and into the bloodstream after exercise. This may trigger the increase in inflammation throughout the body that leads to an onslaught of abnormal fatigue. Tip: You might try a diet that supports a healthy gut biome—while there aren’t yet any studies to prove this, it can’t hurt.
Note: The condition itself has undergone name changes to help remove the stigma around the word “fatigue”—that it isn’t really a serious medical problem. It’s now referred to as ME/CFS—Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. However, because of the role exercise plays, among other findings, the Institute of Medicine has suggested that systemic exercise intolerance disease (SEID) be used instead.
While research continues, here’s how to take charge of the disorder and reclaim your life…
Listen to your body. When your body says it’s tired, lie down to recover. Just sitting down won’t do the trick. You need to get your feet off the floor and elevated so blood in your legs quickly returns to your heart and can be pumped to the brain. Studies in ME/CFS patients show poorly regulated circulation when standing that reduces blood flow to the brain. Don’t lie in bed all the time though or the problem can worsen. Wearing knee high compression socks and drinking plenty of water can be helpful. The more you stay upright after your body signals its exhaustion, the more likely you are to experience an extended period of fatigue and malaise. The more promptly and frequently you listen to your body, the quicker you’ll recover.
Track your recovery time. Your goal for physical activity should be the amount you can recover from completely after a night’s sleep and be back to your baseline (or better!) the next morning. To help you meet that goal, keep an activity and symptom journal to record what you do and how you feel each day. Note how long it takes you to return to normal after a particular activity—some activities can cause delayed consequences in 24 to 48 hours. Then use that information to program each day’s activities so you can avoid triggering push-crash cycles in the future. It is usually best to engage in short activities separated by periods of rest during the day, and allow rest and recovery days between increased activity days.
Understand what’s happening inside your head. Tests reveal that the condition actually slows down information processing. People can’t multitask and they can’t easily get from point A to point B in a conversation during flare-ups. Don’t berate yourself for having this common symptom. Just allow more time and keep things simple.
Send your doctor back to school. The Institute of Medicine has prepared an up-to-the-minute clinician’s guide that will give your doctor the bottom line on diagnosing and treating ME/CFS. Share the link, especially if he/she is still taking the outdated approach of antidepressants and stepped-up exercise to your care.
Note: If you’re currently on antidepressants for ME/CFS without any underlying depression, talk to your doctor about the right way to gradually stop taking them. To help you understand why you should never go cold turkey on your own, read “Time to Go Off That Drug?”
