The "ME" in ME/CFS stands for myalgic encephalomyelitis—an alternate name Head and other sufferers prefer to chronic fatigue syndrome. "CFS is such a lightweight name," she says. "The term 'myalgic encephalomyelitis' has actually been around longer, and it has the advantage of sounding like the serious, real disease that this is."
Here, Head and other experts explain everything you need to know about ME/CFS, from symptoms and risk factors to treatment options.
It's a disease.
The word "syndrome" is another misnomer, because ME/CFS is not a syndrome. It's a disease, Head says. "The Institute of Medicine classifies it as a disease, and I think that's important to emphasise so that people—including doctors—will start taking it more seriously," she says.
It's often debilitating.
"In one sentence, I'd say this is a disease characterised by an inability to function due to an extreme energy deficit," says Zaher Nahle, PhD, vice president for research and scientific programs at the Solve ME/CFS Initiative. "Many sufferers are unable to work and unable to maintain normal relationships, and about 25% of sufferers are house- or bed-ridden by it," he says. (Laura Hillenbrand, author of Seabiscuit and Unbroken, is one of the most prominent ME/CFS sufferers. She's told interviewers she couldn't leave her house for 2 years while working on Unbroken because she lacked the energy to walk to her car.)
It goes beyond chronic fatigue.
"Apart from profound exhaustion, body pain and cognitive issues are common symptoms," says Nancy Klimas, MD, a professor of medicine and immunology at Nova Southeastern University. These cognitive issues aren't simple confusion or memory lapses, Head says. "We're talking people in their 20s and 30s not being able to put a sentence together, or struggling to read a restaurant check," she adds. Problems sleeping, a racing heart, and issues standing up are related symptoms.
It's difficult to diagnose.
There's no way to test or screen someone for ME/CFS, Nahle says. And because the symptoms are so common—those with fibromyalgia or rheumatoid arthritis suffer similar afflictions—it's tough for doctors to spot ME/CFS, he says. "The first criteria we look for is the inability to function normally for more than 6 months," he says. "After that, we start looking for symptoms like abdominal pain, joint pain, problems sleeping, etc."
Lots of people have it but don't know it.
The Institute of Medicine (IOM) estimates up to 2.5 million adults suffer from ME/CFS. But at least 84% of those who have it haven't been diagnosed. While it could show up at any time, 33 is the average age at which the disease sets in, according to the IOM. Also, it appears to affect women more than men, Head says.
It's tied up with inflammation.
The underlying causes of ME/CFS are not well understood, Klimas says. But inflammation seems to play a large role. "The simple act of walking around the house could trigger a cascade of inflammation," she says. Unfortunately, it's not clear what drives this out-of-control inflammation response, she says.
An infection may trigger it.
"There's some evidence that viral infections—something like mononucleosis—may trigger the disease," Klimas says. Nahle agrees, and says many chronic fatigue sufferers start out with flu-like symptoms that grow worse and worse over time. "It can begin as something that seems familiar, but then it progresses into this debilitating disease," he says.
It can come and go.
Klimas says some sufferers will first develop ME/CFS in their 20s or 30s, only to have it dissipate and then come back again later in life. "Some people seem to get better from it, and then down the road something like menopause leads to its reemergence," she says.
Most doctors don't know much about it.
"The disease isn't really discussed in the medical curricula, and so it's not well understood by many doctors," Klimas says. "Obviously, that can make it tremendously difficult for chronic fatigue patients trying to find answers and treatment." Nahle says the Institute of Medicine's recent report recognising ME/CFS as a disease will help to change that, but the vast majority of sufferers will still struggle to find doctors who know how to spot and treat the disease.
There are treatments, but none is FDA approved.
Rigorous studies and clinical trials into ME/CFS have been lacking, Klimas says. For that reason, there are no FDA-approved drugs for the treatment of the disease. "Physicians are forced to treat specific elements—like pain or fatigue—with drugs approved for those symptoms but not for the whole condition," she adds. There are some promising new antiviral and autoimmune disease drugs that may prove effective, she says. "But we're not there yet." (The Power Nutrient Solution is the first-ever plan that tackles the root cause of virtually every major ailment and health condition today.)
"Pacing" can help.
Head says many ME/CFS sufferers learn to control the disease by carefully monitoring and restricting their activity. "You learn that if you preserve energy by limiting physical and mental activity, you can squeeze a few productive hours out of every day," she says. Activity trackers can help with this, she adds.
Sufferers have to be their own advocates.
"There are probably only 10 to 20 specialists in the country who treat ME/CFS, and all of them have waiting lists that stretch to years," Head says. That means chronic fatigue sufferers have to be their own health advocates, she says. Klimas recommends asking your primary care doctor to refer you to cardiologists, pain doctors, and other specialists who can help treat each of your symptoms in turn. She also recommends visiting your doctor armed with education materials from organizations like the IOM and IACFSME. Sites like Solve ME/CFS and Health Rising also provide helpful resources for sufferers and their loved ones, she says.