Charles Shepherd, MD, was a “perfectly healthy” 30-something-year-old when he came down with chicken pox, which he caught while treating a patient with shingles. Even after the painful, itchy rash disappeared, a cluster of debilitating symptoms—unrefreshing sleep, balance problems, brain fog, and an overwhelming fatigue that worsened with activity—strangely stuck around. For two frustrating years, he pushed through long hospital shifts that only made him feel worse, which, in hindsight, he considers one of his biggest mistakes. Finally, though, Dr. Shepherd received a diagnosis that not only changed his life, but also led him to help others dealing with the same issue: myalgic encephalomyelitis/chronic fatigue syndrome, better known as ME/CFS.
ME/CFS is a serious, complex, and often long-lasting condition that can make it hard to go to school, keep or advance in your job, maintain relationships, or even practice basic self-care. According to the CDC, an estimated 3.3 million people in the US are living with ME/CFS, which is thought to be caused by a number of factors, including infections, immune system changes, and genetics (but more on this later). Although the severity varies, about 25% of people with ME/CFS are house- or bedbound, and some need a wheelchair or another mobility device to get around. However, most folks who have it don’t “look” sick, which—like other invisible ailments—often leads people (even some doctors) to dismiss or minimize their symptoms.
Health experts started paying more attention to ME/CFS when millions of people developed long COVID. Specifically, they’re both associated with physical and mental fatigue, and lots of people with long COVID meet the criteria for ME/CFS, so there’s been a renewed interest in finding treatments that work for both conditions.
Although ME/CFS is still being studied, one thing is crystal clear: ME/CFS is a real condition that can affect anyone—and the symptoms are not simply psychological. “I was taught in medical school that this was hysterical nonsense,” Dr. Shepherd, who’s the honorary medical adviser to the ME Association, a patient charity in London, tells SELF. Today, he still deals with ME/CFS, but thanks to advice on how to manage his symptoms, he’s been able to continue working and stay active in the ME/CFS community. Here’s everything to know about ME/CFS, including known causes, symptoms, and treatments.
What are the symptoms for ME/CFS?
ME/CFS can affect just about every part of your body, but in order to be diagnosed in the US, you must have three of the five core symptoms, and then at least one of the other two. That said, your symptoms can change dramatically from one day, week, or month to the next. The three required symptoms for a diagnosis include:
This isn’t a, I only got four hours of sleep, type of tiredness. It’s more of an all-encompassing exhaustion that gets worse with activity and doesn’t get better with rest. You typically have a much lower ability to do anything compared to before you got sick, and you’ll have to experience this symptom for at least six months to be eligible for a diagnosis.
Even if you sleep for 12 hours, you may still feel like you pulled an all-nighter. You may want to snooze some more as a result, or you could develop a “sort of erratic sleep pattern,” Dr. Shepherd says. You could also have problems falling or staying asleep.
This is perhaps the most defining characteristic of ME/CFS. It’s a crushing fatigue that gets much worse with any physical or mental activity, and it typically hits 12–48 hours later. Just standing up can make you feel like you ran a marathon, or you may need a ride home after grocery shopping. Eventually, this leads to a “crash” that can cause symptoms like dizziness, difficulty thinking, and headaches, which may take as long as several weeks to recover from.
The other two core symptoms include cognitive problems or “brain fog,” like trouble with memory and paying attention to details. The other is having issues when you stand up, otherwise known as orthostatic intolerance. You might get dizzy, weak, or lightheaded when you move from a sitting to standing position, or even experience blurriness or spots in your vision.
And although it’s not necessary for a diagnosis, pain in the joints, muscles, or nerves is also very common in people with ME/CFS, Dr. Shepherd says. Other symptoms include a sensitivity to light, sound, odors, and foods; digestive issues; night sweats; and tender lymph nodes in the neck or armpits.
What causes ME/CFS?
ME/CFS actually first started out as just “ME,” or myalgic encephalomyelitis, which refers to muscle pain and inflammation in the brain and spinal cord. It was coined following a 1955 outbreak of the illness in a London hospital. When similar if not identical cases occurred in the US in the 1980s, the CDC recommended the term chronic fatigue syndrome. Today, the two have been combined into ME/CFS as a compromise since some experts and patients felt that CFS didn’t fully capture the seriousness of the disease. As to what causes the symptoms, however, that’s the million dollar question. While experts don’t have a definitive answer at the moment, there are several solid theories.
So far, viral infections (and sometimes bacterial ones) seem to be the most common trigger of ME/CFS; about 80% of people report that their symptoms emerged after contracting a virus. According to the CDC, roughly 1 in 10 people who come down with Epstein-Barr virus (the microbe behind infectious mononucleosis), Ross River virus (a mosquito-borne illness), or Coxiella burnetti (a type of bacteria that causes Q fever disease) go on to develop an ME/CFS-like sickness. But that’s really just the tip of the iceberg, Dr. Shepherd says. You can develop the condition after having viral meningitis or infections with varicella-zoster virus (which causes chicken pox or shingles), influenza viruses, and coronaviruses such as SARS-CoV-1 and MERS-CoV, which causes Middle East respiratory syndrome (MERS).
Your chances of getting ME/CFS after an infection are higher if you had particularly severe symptoms. However, it’s not clear exactly how viruses may be affecting the body, Hector Bonilla, MD, director of Stanford’s ME/CFS clinic in California, tells SELF. It could be that tiny remnants of the virus remain scattered in the body “like a dust everywhere” long after your infection subsides, Dr. Bonilla says, or perhaps the infection triggers your immune system to go a bit haywire (which we’ll get into in a moment). But lots of people who get this condition don’t appear to have had an obvious infection that could be the culprit, or have encountered other things that might be the trigger. For example, some people have developed ME/CFS after exposure to pesticides and insecticides.
Based on cases where multiple family members have developed ME/CFS, researchers think there may be possible genetic factors at play. A few studies have pointed to more than a dozen genes that are associated with major ME/CFS symptoms, including sleep issues and vulnerabilities to stress. However, it’s still not clear if one or more genes are major players here. There’s no predictable pattern of heritability like, say, being born with blue eyes because your mom has them, so more research is needed to better understand this.
It’s possible that the immune system doesn’t know how to turn off after it’s done fighting a virus or responding to physical or emotional stress, Dr. Shepherd says. The result? A bunch of inflammation-causing proteins called cytokines running amok in your body. The higher levels of these cell-signaling molecules are associated with fatigue, Dr. Bonilla says. Some people with ME/CFS also have lower levels of the stress hormone cortisol than healthy people, which can cause inflammation and chronic activation of the immune system.
Studies have linked abnormalities in the brain to ME/CFS as well, Dr. Shepherd says, specifically problems in areas that control movement, sleep, hormone production, and temperature control. That might help explain why people experience such a wide range of symptoms. This is especially important when trying to understand the debilitating fatigue caused by ME/CFS. A study published in February in the journal Nature Communications suggested that fatigue may be caused by a dysfunction in the part of your brain that decides how much effort to exert.
Mitochondria are tiny powerhouses inside the body’s cells that act like batteries to give you the energy to function. But in people with ME/CFS, these mitochondria sometimes don’t work properly, according to some research (although the findings have been contradictory). People with long COVID also have similar issues with their mitochondria. “It’s like you’re driving a car with a 40-gallon gas tank. You go everywhere and keep going and going, but when you get [ME/CFS], your gas tank shrinks to about two gallons,” Dr. Bonilla says. “Any activity can consume gas (or energy) and then you crash.”
Who’s at risk for ME/CFS?
The average age of people with ME/CFS is 33, but it can begin as early as age 10 and as late as age 77. Women are up to four times more likely than men to develop the condition, yet it’s not clear exactly why. In general, women are more likely to have autoimmune disorders, so there could be something unique about how their immune systems function, Dr. Shepherd says.
What’s the diagnosis process like for ME/CFS?
Like some other chronic health conditions, there’s no test you can take that will confirm a ME/CFS diagnosis. Although studies have found potential biomarkers in your blood or tissues that may signal you have this condition, there’s no expert consensus as to which ones are the real ones to look for. That’s why more than 9 in 10 people are living with ME/CFS without an actual diagnosis, according to the CDC. “It’s normally a fairly straightforward diagnosis to make when you got a patient with a typical history of viral infection who’s not recovering,” Dr. Shepherd says. “But there are people who don't quite follow that pattern, and the diagnoses are a bit more difficult to make.”
Instead, your medical team may go through an involved process of elimination over what could be several months to rule out other conditions. You might have several tests and scans to measure your liver and thyroid function, for example. Even still, your lab work and scans can look completely normal even if you have ME/CFS, Dr. Bonilla says.
Because there’s no surefire way to diagnose ME/CFS, you can end up with a disappointing number of misdiagnoses—or you may not receive any diagnosis at all, which can keep you from helpful treatment or advice on how to manage your symptoms, Dr. Shepherd says. And it doesn’t help that a lot of ME/CFS symptoms overlap with other illnesses that also lack diagnostic tests, such as irritable bowel syndrome and fibromyalgia. So knowledge really is power here—the more you know about ME/CFS and its symptoms, the better equipped you’ll be to have conversations with your doctors that will hopefully lead you to a proper diagnosis. The sooner you’re diagnosed, the greater your chances of relief and recovery.
What treatments exist for ME/CFS?
The FDA has yet to approve any specific treatments for ME/CFS, although several studies are underway to find something that works. (A lot of these therapies are also being assessed among people with long COVID, given the similarities between the two.) “We’re still scrambling around in both conditions for an effective form of treatment,” Dr. Shepherd says. “So it is largely providing people with information and guidance on what they can do in relation to self-help management.”
There are certain medications that can help with individual symptoms, like sleep problems. And there are other basic steps you can take, like wearing compression socks to reduce issues with staying upright or getting regular massages to help with pain. Above all, though, it’s really important that you carefully balance your activity levels with periods of rest in a technique called pacing, Dr. Shepherd says. A good way to do this properly is to keep a diary of your activities and symptoms. Eventually, you might notice what Dr. Bonilla calls a “warning symptom” that signals when you’re going to experience a PEM flare-up.
The biggest takeaway here? Don’t push through your symptoms—and remember that everyone’s ME/CFS journey is different. Recovery isn’t always linear, and it can take you on a wildly frustrating ride. But establishing a new norm for your life that prioritizes rest doesn’t have to be a bad thing. It can actually introduce you to a healthier lifestyle that carries a bunch of long-term benefits. And that’s exactly what Dr. Shepherd kept in mind after all this time. “After finally achieving a diagnosis…and learning how to pace my activities, I have made some degree of fluctuating improvement over many years,” he says. “I am now in my 70s and still practicing medicine!”
Related:
- What to Do If Your Chronic Illness Is Taking a Toll on Your Mental Health
- 8 Ways to Cope With a Fear of Needles When You Have a Chronic Illness
- How to Deal If You Have a Chronic Illness and Your Friends Just Don’t Get It
- How to Keep Your Creativity Alive When You Have a Chronic Illness
- How to Actually Nourish Yourself If Your Medication Is Killing Your Appetite
- How to Make a 30-Minute Health File, Your Secret Weapon in the Doctor’s Office
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