The Need to Raise Awareness

Years before diagnosis

A 2015 Institute of Medicine report found that 29% of people with ME/CFS took more than five years to receive a diagnosis from a healthcare professional.Although this study did not include questions about how long it took to make a diagnosis, other studies show that, on average, it takes years to visit multiple doctors. One obstacle is that physicians may know little about the disease: less than one-third of medical schools include ME/CFS in their curricula.

“We must recognize that ME/CFS is underdiagnosed and undertreated. We need to do much more to address this problem,” says John White, MD, MPH, WebMD’s chief medical officer, involved in the development research. and analysis of the results. “The issue was how long it takes for a person to get diagnosed and what kind of appointment they can get from their primary care physician. Often their doctor doesn’t pay attention to their symptoms or says it’s just chronic pain or related to their mental health.”

Survey respondents who said they had never heard of ME/CFS were more likely to be under 45, male, non-white, with secondary education, have a lower family income, and live in a metropolitan area rather than in a rural area.

Fear of not being taken seriously

The survey’s key findings highlight the need for both people with the condition and their physicians to know more about the signs and symptoms of ME/CFS so that no one dismisses it as “all in your head” or the result of something as simple as lack of sleep. :

• The majority (69%) of respondents stated that they felt little or no awareness of ME/CFS.
• About half of the respondents with ME/CFS symptoms said their symptoms significantly impacted their quality of life. A whopping 90% said their symptoms caused them to withdraw from social, recreational, or work activities, but only about one-third told healthcare professionals about it. They “don’t think their doctor will take them seriously” is a common reason they don’t seek medical attention.
• About 6 out of 10 respondents who spoke to a healthcare professional about their ME/CFS symptoms felt that their HCP did not take them seriously:
  • 64% said their healthcare professional advised them to “rest.”
  • 62% said a doctor told them that their symptoms were due to “mental problems.”
• 30% said they prefer to manage their symptoms independently before seeing a doctor.

It shows nothing on tests.

ME/CFS doesn’t always cause the same symptoms in every person, and it can be difficult for people to describe them to their doctor, says Hector F. Bonilla, MD, Clinical Associate Professor of Medicine at Stanford Public Health in Palo Alto, California. . The following three main symptoms are necessary for a diagnosis:

• Severe fatigue for six months or longer impairs your ability to perform everyday tasks.
• Exhaustion after any activity or stress
• Unrefreshing sleep

You must also have one of the following symptoms:

• Cognitive impairment, which Bonilla calls “brain fog” – forgetfulness or fuzzy thinking.
• Orthostatic intolerance or dizziness when you stand or sit up straight, which gets better when you lie down

“Patients tell me they rest or sleep for 10 or 11 hours, but they are still exhausted. They have an unrefreshing sleep,” says Bonilla. “Even after minimal physical activity, they feel exhausted. They are crashing.”

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, hit send, and then completely forget they sent the email or what it said.

“They say it takes them a long time to compose an email. They can’t process information,” says Bonilla. His patients often describe other symptoms such as pain, heart palpitations or indigestion, and nausea. “But when I give them a heart rate monitor, the results can be meager. I send them to a cardiologist, and they don’t find anything.”

No laboratory tests can confirm ME/CFS, so doctors must have good clinical skills, listening skills, and patience to narrow down the causes of your symptoms to diagnose.

“If someone comes into their doctor’s office and says, ‘I’m exhausted,’ it could be due to various health conditions. People may not get enough sleep, but many other conditions can cause extreme fatigue. Some clinicians still believe that ME/CFS is just a psychological problem,” says Unger.

Gaps in awareness cross-gender and cultural boundaries

The survey results showed that more work needs to be done to raise awareness about ME/CFS and who is most impacted by it.

People of color and young people were less aware that ME/CFS can affect women more than men or that ME/CFS often goes undiagnosed by a doctor.

However, black and Hispanic respondents were more likely than white to know that ME/CFS did not affect white people more than other groups.

Most revealing:

• 85% of white respondents considered ME/CFS a “real disease” compared to 77% non-Hispanic blacks.
• More women than men feel ME/CFS is an actual disease.
• People living in rural areas were less likely to think of ME/CFS as an illness than city dwellers.

Overcoming Stigma

Unger says that many people with ME/CFS face stigma because of their diagnosis, and members of their own families may not accept it as an actual illness.

“You may struggle with guilt about not being able to do what you want or need to do in your daily life, and this is coupled with someone telling you that you need to get more rest. Naturally, people with ME/CFS may struggle with depression and anxiety,” she says. “People should have hope. This will require a concerted, sustained effort, and this survey shows we have a long way to go.”

Suppose you made an appointment to talk about ME/CFS or your symptoms with your doctor. In that case, the CDC website offers a one-page printed handout to help you or your family member get ready, including crucial medical information to collect ahead of time and take with you. Yourself: https://www.cdc.gov/me-cfs/pdfs/First-Visit-MECFS_508.pdf.