Worried you have 'chronic fatigue'? Here's what to know

What do Cher, Stevie Nicks, and Flea all have in common? Aside from all earning appearances on my “When Hormones Attack” playlist, they’ve all been diagnosed with chronic fatigue syndrome, also known as myalgic encephalomyelitis, also known as chronic fatigue immune dysfunction syndrome, also known as post-viral fatigue syndrome. Actually, chronic fatigue syndrome has a whole boatload of names, from neurasthenia to yuppie flu disease (not even joking).

Recently, the long-misunderstood condition has grabbed headlines thanks to a comprehensive report by the Institute of Medicine, arguing for the medical community to treat the condition as a physical disease, and not simply psychological one—as well as a new study that points to the illness’ biological roots. If you’ve heard the buzz and thought, Hey! I’m tired all the time! Maybe I have it! we’re here to help.

So wait, what is it?

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is actually a host of medical conditions across the body’s organ systems that present with symptoms including mental and physical exhaustion, muscle and joint pain, depression, and cognitive difficulties such as loss of concentration and memory.

Those with the illness feel extremely tired, even if they’re getting eight hours of sleep and haven’t physically exerted themselves. Other symptoms include a sore throat, swollen lymph nodes in the neck or armpit area, and headaches.

How is it different from just being tired?

The condition may have “fatigue” in the name, but don’t let that mislead you—there’s a lot more to it than simply being chronically tired, and medical professionals have been fighting to officially change the name for decades.

In 2011, an International Consensus Panel of clinicians, researchers, teaching faculty, and an independent patient advocate agreed that the “chronic fatigue” label was misguided, arguing that referring to the condition as “fatigue” diminishes its severity and downplays its profound effect on daily life. The group decided that calling the condition “myalgic encephalomyelitis” was more accurate—though the name hasn’t quite caught on in popular conversation yet.

What causes it?

It’s not really known what causes ME/CFS, but the hypothalamus and pituitary gland, which help regulate hormones, may play a role. When these regions of the brain are exposed to prolonged stress or infections, they can start acting up—disrupting our hormonal glands, digestion, urination, sexual arousal, and sleep rhythm.

Doctors have found that ME/CFS can follow a serious flu-like infection by the Epstein-Barr virus—the culprit behind mononucleosis (mono). Adolescents who contract mono are at a high risk of developing ME/CFS in the year following infection.

So if there’s stress involved, is it biological or psychological?

All signs point to biological. Since the causes can be vague and the condition can be related to stress, there is a psychological component—but recent research has provided new evidence of the condition’s biological origin.

In the study from Columbia University’s Mailman School of Public Health, researchers took blood samples from nearly 650 adults, 298 of which had ME/CFS. In the 52 patients who had developed ME/CFS in the last three years, the researchers found “differences in the immune molecules in the bloodstream.” These patients had higher levels of cytokines, proteins that are involved in immune system function—however, in the patients who had had the condition for more than three years, cytokine levels tapered off. The researchers are still trying to understand why, but the findings could point to when and how doctors might intervene, said Mady Hornig, associate professor of epidemiology and lead researcher on the study,

“Something to suppress the immune system may be more beneficial perhaps in the early phases of disease,” Hornig told Fusion, “whereas in later phases, many of these cytokines seem to be exhausting themselves.” Because the cytokines are working overtime in the early part of the disease, the immune system appears to undergo an accelerated aging process, which suggests it could benefit from a boost during this time.

How many people are affected?

It’s actually hard to say. Because the disease involves a range of symptoms and the cause is unknown, ME/CFS goes largely undiagnosed. Previous estimates pegged the number affected at around 4 million Americans, although according to last month’s report from the Institute of Medicine, only between 836,000 and 2.5 million Americans are affected. Women are two to four times more likely to develop the condition, and while it can affect folks of any age, people in their 40s and 50s are most commonly affected.

Seventy percent of patients don’t receive a diagnosis for a year—sometimes not for as long as ten years. It’s tough when both doctors and patients have difficulty recognizing the syndrome.

What does treatment look like?

Currently, there is no treatment for the disease. Since so much about ME/CFS is unknown, no “cure” has been developed, so most doctors focus on alleviating symptoms.

“We don’t know what the root causes are,” said Hornig, “so it’s really something that we’re still working on along with other researchers—trying to understand the triggers, looking for various microbes or infectious agents that may play a role in setting this process in motion.”

That said, it is possible for patients with ME/CFS to make a recovery—those who take on a combined regimen of cognitive behavior therapy and/or exercise therapy along with specialized medical care have a higher chance of fighting it.