Chronic fatigue syndrome can cause disabling symptoms such as severe fatigue, chronic pain, brain fog, and difficulties with day-to-day tasks.

Millions of people across the globe, up to about 2.5 million people in the United States alone, are believed to be affected by this condition, and many don’t have a formal diagnosis. One of the reasons for this is the lack of a specific test for chronic fatigue syndrome.

In this article, we look at how doctors diagnose chronic fatigue syndrome and recommend long-term management of the symptoms.

Chronic fatigue syndrome (CFS), sometimes referred to as myalgic encephalomyelitis (ME) or systemic exertion intolerance disease (SEID), is a chronic condition that’s characterized by severe chronic fatigue.

It is difficult for a person to perform their day-to-day activities if they have a severeCFS. They may not be able to fulfill school obligations, engage in social activities, or even perform basic tasks like taking a shower. They may not be able to leave the bed.

People with chronic fatigues experience a worsening of symptoms called post-exertional malaise when they attempt to perform these activities. Sleep difficulties, cognitive impairment, and chronic pain can all be symptoms ofCFS during PEM.

Researchers are not entirely sure what causes CFS. However, according to the Centers for Disease Control and Prevention (CDC), possible causes may include:

  • There are certain infections.
  • Changes to the immune system.
  • There are underlying biochemical differences.
  • Genetics

There is no approved blood test that can help diagnose the disease.

A pilot study from 2019 explored a blood test that would allow doctors to screen for certain cellular markers related to ME/CFS. In this study, the researchers used an ultrasensitive blood test to determine if there were any notable cellular differences in participants with CFS.

The immune cells of people with chronic fatigues showed a different response to stress than the cells of people without it. The researchers believe that their test could be a low-cost, minimally-invasive, and reliable way to help diagnose the disease.

This test has yet to be approved as a diagnostic blood test for CFS. However, the National Institutes of Health believes this study could be the first step in developing a standard test. More research is needed.

Without an official blood test to help diagnose CFS, it can take years for people to receive a diagnosis. Here’s what doctors currently look for when making a diagnosis:

  • Substantial impairment: CFS causes significant impairment in someone’s ability to do activities at home, school, work, or in social settings. This impairment usually comes as a result of severe, persistent fatigue that doesn’t get better with rest.
  • Post-exertional malaise (PEM): After engaging in mental or physical activities, CFS can cause PEM, which is a worsening of chronic fatigue symptoms. PEM tends to appear within 12 to 48 hours after the “exertion” and can last for days or weeks.
  • Trouble sleeping: Chronic fatigue syndrome can cause difficulties sleeping, such as trouble falling asleep or staying asleep, or the inability to feel refreshed after sleeping. Not feeling refreshed even after a full night’s sleep is one of the hallmark symptoms of CFS.
  • Cognitive difficulties: When someone has CFS, they may struggle with decreased cognitive function. Sometimes referred to as “brain fog,” cognitive impairment can cause trouble with memory, information processing, concentration, and even language comprehension.
  • Orthostatic intolerance: Orthostatic intolerance refers to the development of symptoms, such as dizziness, that happen when moving from a reclining to an upright position. While CFS isn’t the only condition to cause this, people with CFS often experience symptoms when sitting or standing up.

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One of the most important steps in receiving an accurate diagnosis of CFS is ruling out similar conditions. According to the CDC, conditions that may appear similar to CFS include:

If you suspect that you have a condition called chronic fatigue syndrome, your doctor will likely make sure that no other conditions are causing your symptoms.

There’s currently no cure for CFS. However, treatment options exist to help people with this condition manage their chronic symptoms and make it easier to function in daily life.

Activity pacing

“PEM is a flare-up in people with chronic fatigues, and activity management can help prevent it. pacing is about finding one’s physical and mental limits. People with chronic fatigues can avoid flare-ups by finding these limits.”

Activity/sleep/symptom logs, heart rate trackers, and activity/exercise plans are all helpful tools for activity management.

Sleep habits

Creating better sleep habits is important for everyone, but healthy sleep habits don’t always make a huge difference for people with CFS.

Other options can be considered when this is the case. These include drugs that can help someone sleep or wake up.

“If sleep medications aren’t helping with the sleep related symptoms of CFS, it’s a good idea to meet with a sleep specialist to explore more options”

Pain management

Many people with CFS also deal with chronic pain, including headaches, joint and muscle pain, and skin soreness. Over-the-counter (OTC) pain medications, such as ibuprofen or acetaminophen, can be helpful for managing some of these chronic pain symptoms.

Sometimes, OTC pain meds aren’t enough. This is where a pain specialist can step in. Pain specialists help people with chronic pain learn how to better manage their pain through other treatment options and lifestyle changes.

Certain medications

Medications can play a role in the treatment of CFS by helping to reduce the symptoms of other conditions, like chronic pain, cognitive problems, or Mental health conditions.. For example, antidepressants can help ease the symptoms of depression and anxiety that may be present with CFS.

However, it’s always important to consider the side effects of these medications to ensure that they won’t make someone’s CFS symptoms worse.

Graded exercise therapy and cognitive behavioral therapy

Recommended treatment for CFS may also include graded exercise therapy and cognitive behavioral therapy (CBT).

A doctor-controlled exercise program that starts with gentle exercises and is increased gradually as a person gains strength is called graded exercise therapy.

“A graded exercise program with CBT can help a person become more aware of their body’s capabilities and limits. Overexertion can make symptoms of chronic fatigue worse.”

There is more research needed to prove the effectiveness of these two methods.

Lifestyle changes

CFS is a condition that requires careful and constant management and support. Lifestyle changes, such as going to therapy and eating a balanced diet, are not a cure for CFS, but they may help reduce certain symptoms.

Talk with a doctor about creating a treatment plan that works for you

There is no treatment for CFS. What works for one person may not work for another.

Discuss your symptoms with your doctor and work together to develop a treatment plan that is right for you if you have been diagnosed with chronic fatigue syndrome.

When will a diagnostic blood test for chronic fatigue syndrome (CFS) be available?

Although a pilot study published in 2019 showed promise for a potential CFS blood test, there’s still no singular test that can help diagnose this condition. However, scientists across the globe, such as those involved in Stanford’s Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Initiative, are working hard to find new diagnostic and treatment options for CFS.

Does chronic fatigue syndrome (CFS) ever go away?

There is no cure forCFS. Flare-ups and remission are the states people with the condition tend to cycle in. The symptoms ofCFS can be mild or disappear altogether when someone is in a state of remission. If a flare-up is triggered, symptoms can reappear.

Can a specific diet or other lifestyle changes help with symptoms?

Some people with chronic fatigues find that certain lifestyle changes can make their symptoms better. Although these management techniques may help alleviate the severity of symptoms in some people, they may not work for everyone and they are not a cure forCFS.

Do I have chronic fatigue syndrome (CFS) or long-haul COVID-19?

Long-haul COVID-19 symptoms, such as severe fatigue, cognitive dysfunction, and even PEM, can mimic those found in CFS.

If you have recently had COVID-19 and have noticed persistent symptoms, you should talk to a doctor. They can help you narrow down if you have long COVID, or something else.

It can be difficult to get a diagnosis without an official blood test. Even if you do have a diagnosis, you may be left with more questions than you started with, especially when it comes to treatment options and long-term management of your symptoms.

If you or someone you love has received a diagnosis of CFS, consider reaching out to a CFS specialist for more information. They can tell you what your treatment options are, and how best to move forward.