Up to 2.5 million American adults live with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), an all-consuming fatigue that ruins their daily quality of life. At times, they’re too tired to get out of bed, take a shower, or cook a meal. They may have body pain, fuzzy thinking, and dizziness that may make it impossible to work or take part in everyday activities.
Worse, people living with ME/CFS may find that their doctor, loved ones, or employers don’t take their symptoms seriously or believe they result from an illness.
A new study by the CDC and Medscape shows that lack of awareness about ME/CFS is widespread, and this delays diagnosis and treatment for years. The study’s findings were based on an online survey completed by 3,550 adults 18 or over who visited WebMD.com from Jan. 22-Jun. 8, 2021.
“One of the most striking findings from the survey was that so many people have trouble being understood by their clinician when they talk about their symptoms,” says Elizabeth Unger, MD, PhD, chief of the CDC’s Chronic Viral Diseases Branch.
Most doctors and people with chronic fatigue syndrome don’t know the name of this syndrome or anything else about it. The CDC estimates that 90% of people with ME/CFS aren’t diagnosed by a health care professional.
“Of all the people who completed the survey, only 46% had ever heard about ME/CFS. Even among those who do, only a minority understood there’s a medical reason for their symptoms. Patients and their families aren’t aware that it exists, and that they can get help and seek care from their primary care physicians,” Unger says.
Years to Get a Diagnosis
Although this survey didn’t include questions about how long it took to get a diagnosis, other research suggests that on average, it takes years of visits to multiple doctors. A 2015 report from the Institute of Medicine found that 29% of people with ME/CFS took more than 5 years to get a diagnosis from a health care professional. One hurdle is that doctors may not know much about the illness: Less than one third of medical schools include ME/CFS in their curriculum.
“We need to recognize that ME/CFS is underdiagnosed and undertreated, and clearly, we need to do much more to address this,” says John Whyte, MD, MPH, WebMD’s chief medical officer, who was involved in the design of the study and analysis of the results. “The challenge has been how long it takes someone to get a diagnosis, as well as the reception they may get from their primary care physician. Often, their doctor will dismiss their symptoms or say that it’s just chronic pain or due to their mental health.”
Survey respondents who said they had never heard of ME/CFS were more likely to be under 45 years old, male, non-white, high school educated, have a lower household income, and live in a metropolitan area, not a rural location.
Fear of Not Being Taken Seriously
Key findings from the survey underscore the need for both people with this condition and their doctors to know more about the signs and symptoms of ME/CFS, so no one dismisses it as “all in your head” or the result of something simple, like a lack of sleep:
- Most (69%) of survey respondents said they felt slightly or not at all knowledgeable about ME/CFS.
- About one-half of respondents with ME/CFS symptoms said their symptoms have a significant impact on their quality of life. A whopping 90% said their symptoms caused them to give up social, recreational, or work activities, but only about one-third have spoken to a health care professional about it. They “don’t think their health care professional will take them seriously” was a common reason for not seeking medical care.
- About 6 in 10 respondents who did talk to a health care professional about their ME/CFS symptoms felt their HCP did not take them seriously:
- 64% said their health care professional told them to “get some rest.”
- 62% said the doctor told them their symptoms were due to a “mental issue.”
- 30% said they prefer to manage their symptoms on their own before seeing a health care professional.
Nothing Shows Up on Tests
ME/CFS doesn’t always cause the same symptoms in each person, and they can be hard for people to describe to their doctor, says Hector F. Bonilla, MD, clinical associate professor of medicine at Stanford Health Care in Palo Alto, CA. A diagnosis requires these three core symptoms:
- Severe fatigue for 6 months or longer that impairs your ability to do normal tasks
- Exhaustion after any kind of activity or stress
- Unrefreshing sleep
You must also have one of these symptoms:
- Cognitive impairment, which Bonilla calls “brain fog” — forgetfulness or fuzzy thinking
- Orthostatic intolerance, or dizziness when you stand or sit upright that eases when you lie down
“Patients will tell me that they rest or sleep for 10 or 11 hours, but they’re still exhausted. They have unrefreshing sleep,” Bonilla says. “After even minimal physical activity, they feel exhausted. They crash.”
Brain fog can make people with ME/CFS unable to perform simple work or personal tasks. People tell Bonilla, who specializes in treating the condition, that they type emails at work, press send, and then completely forget that they sent an email or what it said.
“They say it takes them a long time to even compose an email. They simply can’t process information,” Bonilla says. His patients often describe other symptoms like pain, rapid heartbeat, or stomach upset and nausea. “But when I give them a heart rate monitor, the results can be very low. I send them to see a cardiologist, and they don’t find anything.”
No laboratory tests can confirm ME/CFS, so diagnosis requires doctors to have good clinical skills, listening skills, and patience to narrow down the cause of your symptoms.
“If someone comes to their doctor’s office and says, ‘I’m really tired,’ that could be due to many different health conditions. People may not be getting enough sleep, but severe fatigue can be caused by many other conditions too. Some clinicians still believe that ME/CFS is just a psychological problem,” Unger says.
Awareness Gaps Cross Gender and Cultural Lines
The survey’s results showed that more work needs to be done to improve awareness of ME/CFS and who it most affects.
People of color and younger people were less aware that ME/CFS can affect women more than men or that ME/CFS often isn’t diagnosed by a doctor.
However, Black and Hispanic respondents were more likely than whites to be aware that ME/CFS doesn’t affect white people more than other groups.
Most telling:
- 85% of white respondents thought of ME/CFS as a “real illness” compared to 77% of non-Hispanic Black people.
- More women than men consider ME/CFS to be a real illness.
- People living in rural areas were less likely to think of ME/CFS is a real illness than city dwellers.
Overcoming Stigma
Many people with ME/CFS face a stigma about their diagnosis, and their own family members may not accept it as a real illness, Unger says.
“You may struggle with guilt that you’re not able to do what you want or need to do in your daily life, and this is coupled with someone telling you that you just need to get more rest. Naturally, people with ME/CFS can struggle with depression and anxiety,” she says. “People need to have hope. This will take a concerted, continuing effort, and this survey shows we have a long way to go.”
If you’ve made an appointment to talk about ME/CFS or your symptoms with your doctor, the CDC website offers a one-page, printable handout to help you or your family member prepare, including important health information to gather ahead of time and bring with you: https://www.cdc.gov/me-cfs/pdfs/First-Visit-MECFS_508.pdf.