Jessie Voigts was 27 when she started to feel tired all the time. Yet she just couldn’t sleep. Soon, she experienced brain fog and body pain so intense, it felt like she’d been hit by a truck and dragged for blocks while fighting the flu. It was difficult to move, breathe or simply be. Jessie was soon diagnosed with chronic fatigue syndrome (CFS), which is also called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
As many as 9 million people are living with ME/CFS in the United States, and the disease is more common in women than men. In fact, women are four times more likely to have ME/CFS than men. The condition is complicated, and often hard to diagnose and treat. Voigts, now 54, said finding the right healthcare provider (HCP) and the right treatments have helped her somewhat manage her symptoms, but she still struggles with ME/CFS today.
To learn more about this condition, we asked Emily Taylor, the vice president of advocacy engagement for Solve M.E., the nation’s leading organization for ME/CFS advocacy and research, for more on what you need to know about this condition.
What is chronic fatigue syndrome (ME/CFS)?
ME/CFS is a chronic, debilitating disease that involves feelings of extreme exhaustion for at least six months. Symptoms get worse after mental and/or physical activity and don’t improve with rest. No one knows the exact cause of ME/CFS, but it may be triggered by a virus or more than one illness.
“We don’t fully understand the underlying cause, but there are some really promising theories that explain most of the evidence,” Taylor said. These theories include infection in the vagus nerve, mitochondrial cells that have been altered by a virus and autoimmune response as the cause of ME/CFS. It’s possible that more than one theory is correct.
What are the symptoms of chronic fatigue syndrome (ME/CFS)?
ME/CFS symptoms may vary from person to person, but post-exertional malaise (PEM), which is the flaring of symptoms 12-48 hours after physical or mental activity is common, and Solve M.E. believes PEM must be present for a diagnosis of ME/CFS. “It’s what we consider the hallmark symptom of the disease,” Taylor said.
Other symptoms include:
Why is chronic fatigue syndrome (ME/CFS) more common in women?
Researchers aren’t exactly sure why more women get ME/CFS. There are several theories, including the possibility that there is an inflammatory cause and higher leptin levels in women are responsible. Another idea is that men make more testosterone, which is anti-inflammatory. An additional theory is that there’s a possible autoimmune connection, since women are more likely to get autoimmune diseases.
Is chronic fatigue syndrome (ME/CFS) more common in women of a certain age?
We don’t have solid numbers to tell us the most common age when women get the disease because up to 91% of people who have ME/CFS are undiagnosed. The data show who gets diagnosed, which reflects who has access to the healthcare system — not necessarily who actually has the condition.
How can women get help for chronic fatigue syndrome (ME/CFS)?
If you experience PEM plus two or three symptoms for six months or more, and they’re harming your quality of life, you may have ME/CFS.
HCPs use a diagnostic algorithm to determine whether you have this illness, and resources can be found in the U.S. ME/CFS Clinician Coalition.
There’s only a small number of specialists in the U.S. and some patients choose specialized doctors, but you can also see your primary care physician. The most important part is choosing an HCP who’s willing to be your partner. “It’s really about your relationship with the [HCP]. Is that [person] willing to validate your symptoms? Are they willing to hear you out if you have a theory and do their own research? If so, you’ll be successful in working through your symptoms of this illness,” Taylor said.
What is the treatment for chronic fatigue syndrome (ME/CFS)?
There’s no FDA-approved treatment for ME/CFS. However, the U.S. ME/CFS Clinician Coalition provides a list of medications organized by symptoms. You and your HCP can begin with the symptom that’s harming your quality of life the most and move on from there, finding the right combination of drugs for you.
It’s also important to know what you can expect. “Many patients look for that magic solution that will make them 100% better. They won’t find that, but they might find three or four things that each make them 25% better and improve their quality of life,” Taylor said.
Some patients find relief in non-medicinal methods such as water therapy and yoga.
Do any racial disparities exist in women with chronic fatigue syndrome (ME/CFS)?
Unfortunately, this wasn’t studied much in the past, so there isn’t data to indicate what racial disparities exist. However, racial representation has been a problem. “In the past, ME/CFS has been presented as a white woman’s illness, which just isn’t true. All women are susceptible to this illness,” Taylor said. According to the CDC, white people are more likely to get diagnosed than people of other races, but it is believed that people from marginalized communities often go undiagnosed.
What should women know about current research of chronic fatigue syndrome (ME/CFS)?
One silver lining of the pandemic is that the arrival of long Covid brought new understanding to virus-triggered illnesses, including ME/CFS. Science is moving very quickly. Taylor compared this time to when scientists finally figured out how cancer works. “That’s where we are with infection-associated chronic illnesses. We’re starting to make discoveries and realize that there are all these connections, and it’s going to move all of us forward,” she said.
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