Severe fatigue, chronic pain, brain fog, difficulties with day-to-day tasks — these are just a few of the often disabling symptoms of chronic fatigue syndrome.
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 take a look at how doctors currently diagnose chronic fatigue syndrome, along with their recommendations for 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.
CFS can be so severe that makes it difficult for a person to perform their day-to-day activities. They may not be able to fulfill work or school obligations, engage in social activities, or even perform basic tasks like cooking a meal or taking a shower. In severe cases, they may not even be able to leave bed.
When people with CFS do attempt to perform these activities, they often experience a worsening of symptoms called post-exertional malaise (PEM). During PEM, other symptoms of CFS, like sleep difficulties, cognitive impairment, and chronic pain, can flare up.
Researchers are not entirely sure what causes CFS. However, according to the
- certain viral or bacterial infections
- changes to the immune system
- underlying biochemical differences
Currently, there’s no blood test that has been approved to help diagnose CFS.
Results of the blood test showed that the immune cells of participants with CFS showed a much different response when exposed to stress than the cells of healthy participants. Given these results, the researchers believe that their test could potentially be a low-cost, minimally invasive, and reliable way to help diagnose CFS.
This test has yet to be approved as a diagnostic blood test for CFS. However, the
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.
To receive a diagnosis of CFS, a person must have experienced significant impairment, PEM, and unrefreshing sleep, a majority of the time, for a period of at least 6 months. They must also experience either cognitive impairment, orthostatic intolerance, or both.
One of the most important steps in receiving an accurate diagnosis of CFS is ruling out similar conditions. According to the
- autoimmune conditions
- certain cancers
- diabetes mellitus
- disordered eating
- drug side effects
- genetic disorders
- hormonal imbalances
- Lyme disease
- mental health conditions
- multiple sclerosis
- sleep disorders
If you suspect that you might have CFS, your doctor will likely make sure that no other underlying conditions are causing your symptoms before making a diagnosis.
There’s currently no cure for CFS. However,
Activity management — also called pacing — is an approach that can help prevent PEM (sometimes called a flare-up) in people with CFS. One of the most important elements of pacing is finding one’s physical and mental limits. By finding these limits, people with CFS can avoid triggering a flare-up of their symptoms.
Activity/sleep/symptom logs, heart rate trackers, and activity/exercise plans can all be especially helpful tools for activity management.
Creating better sleep habits is important for everyone, but healthy sleep habits don’t always make a huge difference for people with CFS.
When this is the case, other options can be considered. These include medications that can help someone fall asleep, stay asleep, or wake up feeling more refreshed.
If sleep medications aren’t helping with the sleep-related symptoms of CFS, it can be helpful to meet with a sleep specialist to explore more options.
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.
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
Graded exercise therapy is a doctor-controlled exercise program that starts with very gentle exercises — such as 5 minutes of stretching per day — and is increased gradually over time as a person gains strength.
Combining a graded exercise program with CBT is recommended because it can help a person become more aware of their body’s capabilities and limits. This is important because overexertion can exacerbate symptoms of chronic fatigue.
More research is needed to prove the effectiveness of these two methods for treating CFS.
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
It’s important to remember that there’s no one “treatment” for CFS. Everyone has different symptoms, so what works for one person may not work for another person.
If you’ve received a diagnosis of CFS, discuss your symptoms with your doctor and work together to develop a treatment plan that’s right for you.
When will a diagnostic blood test for chronic fatigue syndrome (CFS) be available?
Does chronic fatigue syndrome (CFS) ever go away?
There’s currently no cure for CFS. But people with the condition tend to cycle between two states: flare-ups and remission. When someone is in remission, the symptoms of CFS may be mild or disappear altogether. However, symptoms can reappear at any time if a flare-up is triggered.
Can a specific diet or other lifestyle changes help with symptoms?
Some people with CFS find that certain dietary habits or lifestyle changes can make their symptoms feel better. But although these management techniques may help alleviate the severity of symptoms in some people, they may not work for everyone and they’re not a cure for CFS.
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’ve recently had COVID-19 and noticed persistent symptoms even after recovering, talk with a doctor. They can help narrow down whether you have long COVID, CFS, or something else.
Without an official blood test for CFS, it can be difficult to get a diagnosis. And even once you do have a diagnosis, you may be left with more questions than you started with — especially when it comes to treatment options and the 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.