What Do We Know About Chronic Fatigue Syndrome?

chronic fatigue syndrome

Chronic fatigue syndrome, or CFS, is a complex condition that can be debilitating. It is characterized by extreme fatigue that is not improved by resting. It can become worse with mental or physical activity. Symptoms affect multiple systems in the body that can include weakness, muscle pain, poor memory or concentration, and insomnia. All of these symptoms can result in a decreased desire to participate in daily activities. Here’s what you should know about diagnosing and treating chronic fatigue syndrome.

What is chronic fatigue syndrome? 

Chronic fatigue syndrome is a condition that causes extreme tiredness, weakness, pain, and overall ill health. You may also hear it called CFS or myalgic encephalomyelitis.

It is very difficult to diagnose as well as treat. The most common hallmark of CFS is an inability to feel rested after periods of rest. Also, for these patients any activity can cause a day or more of exhaustion. When chronic fatigue syndrome or earlier related conditions were first diagnosed they were more common among men. At the time, researchers thought it was a result of societal pressures on males in our culture. Today, the diagnosis is much more common among women.

We don’t know much about chronic fatigue syndrome. It may have a long history in human culture in spite of not being named until the later part of the twentieth century. CFS also often has components that make it appear as an illness or a virus. In fact, some researchers believe a virus may cause the condition.

Typically the severe fatigue lasts six months or more. In addition, the doctor must be able to rule out other possible medical explanations. Some other conditions that are similar to CFS are various sleep disorders, anemia, or depression. It is important to note that depression is a common symptom of the condition. However, it isn’t the only cause of depression so a medical professional must rule it out as a primary cause of the tiredness.

What are chronic fatigue syndrome symptoms?

While weakness, pain, and memory problems are most common, there are other symptoms to watch out for. Chronic fatigue syndrome symptoms include:

  • Extreme fatigue 
  • Weakness: Someone with CFS will feel generally weak and unable to participate in physical activities or exert much energy.
  • Muscle pain: They may begin to feel pain in their muscles that resembles soreness from physical activity.
  • Memory issues: Many patients with chronic fatigue syndrome have issues with memory loss.
  • Poor concentration: Similarly, difficulty concentrating on normal daily activities is common.
  • Headaches: The onset of headaches that were abnormal for the patient prior to other symptoms of CFS being present is also common.
  • Insomnia: In spite of the overall tiredness that a patient with CFS experiences, insomnia prevents them from having normal sleep cycles.
  • Depression: Chronic fatigue syndrome can also cause depression and depression like symptoms, as well as anxiety, in individuals dealing with the condition.
  • Anxiety
  • Sore throat: Pain in the throat is common and persistent.
  • Swollen and painful lymph nodes: The lymph nodes in the neck and under the arms are sometimes swollen and painful to the touch.
  • Painful joints: Patients with CFS can experience pain in the joints much like that of someone with osteoarthritis but without the redness or swelling.
  • Overall malaise: Finally, the hallmark of CFS is “malaise” or an overall and constant run-down feeling like the symptoms common with the flu.

Extreme tiredness is typically the first symptom patients will experience with chronic fatigue syndrome. Some patients also report flu-like symptoms before they begin to notice long-term fatigue. The condition is also associated with other health issues such as irritable bowel syndrome (IBS) and fibromyalgia.

Who is at risk for chronic fatigue syndrome?

CFS was first officially labeled in the 1980s and at the time was diagnosed more among men than women.  Today it is much more common in women.

Experts also disagree on just how many people suffer from chronic fatigue syndrome. They place the number anywhere between one and four million people in the United States alone. Doctors are also uncertain about cases of chronic fatigue syndrome that have gone undiagnosed or misdiagnosed. Children do develop CFS, but not as often as adults or teenagers.

What are the risk factors for chronic fatigue syndrome?

There is quite a bit of speculation about the risk factors and causes of chronic fatigue syndrome. Many researchers are dedicating their careers to studying the condition but no one has been able to determine a single cause for it. However, there are some theories about a possible origin.

One possible cause is an infection. A virus, such as the one that causes Epstein Barr, herpes, or the retrovirus XMRV have all been linked to chronic fatigue syndrome. Genetics may also play a role and some people are more susceptible due to a family history. There may be a cause based on how our brain, neurotransmitters, and hormones all work together. This is known as neuroendocrinology. Surviving a traumatic event may also trigger CFS in some patients. Because there are so many different ideas about the cause of chronic fatigue syndrome, doctors are often unable to provide an exact diagnosis or explanation for the experiences of the condition.

chronic fatigue syndrome risks

Chronic fatigue syndrome treatments

Because CFS is difficult to diagnose and the exact causes are not known there is no single FDA approved treatment for the condition. Most doctors will take the approach to reduce or treat the symptoms in an attempt to allow an affected patient to live a more normal life.

A holistic approach for treating chronic fatigue syndrome patients may be one of the best solutions available today as it takes into account the entire body and mental health of each patient in a way that works for them individually.

A patient may discuss some options with their doctor including:

  • Acupuncture
  • Aromatherapy
  • Massage
  • Relaxation and meditation
  • Modified yoga

Chronic fatigue syndrome research 

Studies of chronic fatigue syndrome continue. One day, more answers will be readily available for patients who experience the debilitating effects of the condition.

Using functional PET imaging to help diagnosis

Researchers at the RIKEN Center for Life Science Technologies, along with partners at Osaka City University and Kansai University, used PET imaging to determine that patients with chronic fatigue syndrome experience increased levels of inflammation within the nervous system.

This inflammation, known as neuroinflammation, has long been at the center of theories surrounding the cause of CFS but there has never been much clear evidence to support it. This study, published by the Journal of Nuclear Medicine, found that levels of neuroinflammation markers are in fact elevated in chronic fatigue syndrome patients when compared to healthy control subjects.

A PET scan, or positron emission tomography, is an imaging test. It uses a radioactive tracer to search for and identify disease in the human body.

The study worked with nine people diagnosed with chronic fatigue syndrome and ten healthy people. All of them were willing to undergo the PET scanning. Researchers also asked them multiple questions about their:

  • Overall fatigue levels
  • Difficulty concentrating
  • Pain
  • Mental well-being

The PET scan utilized a protein that is created by microglia and astrocyte cells in the body, which are known to be active in the process of neuroinflammation.

The inflammation of the nervous system was higher in CFS patients than in the healthy individuals. They were also able to note that this inflammation occurred in only certain areas of the brain including the cingulate cortex, hippocampus, amygdala, thalamus, midbrain, and pons. When the inflammation was elevated in these areas it seemed to correlate with the symptoms of chronic fatigue syndrome. For example, patients who reported that they had trouble concentrating throughout the day seemed to experience neruoinflammation in the amygdala, which is involved in cognitive abilities.

Clues in brain imaging

Hot on the heels of the Japanese study, researchers at Emory University and the Center for Disease Control in Atlanta Georgia also made a breakthrough regarding the use of brain imaging for patients with CFS.

A study using brain imaging showed that patients with chronic fatigue syndrome appear to have reduced responses in the basal ganglia, a region of the brain connected with fatigue. Researchers compared findings with health control subjects to determine the correlation. This suggests that CFS may be associated with change in the brain that involves the brain circuits that regulate motor activity as well as motivation.

The lead author on the study, Arthur Miller, MD, noted:

“A number of previous studies have suggested that responses to viruses may underlie some cases of CFS. Our data supports the idea that the body’s immune response to viruses could be associated with fatigue by affecting the brain through inflammation. We are continuing to study how inflammation affects the basal ganglia and what effects that has on other brain regions and brain function. These future studies could help inform new treatments.”

The research began with comparing 18 chronic fatigue syndrome patients to 41 healthy volunteers. Patients and volunteers were asked to correctly guess the color of a preselected card. If they got the answer right, they would win one dollar. Once their guess was made and the card was revealed the researchers measured the blood flow to the basal ganglia. After they made a guess, the color of the card was revealed. Then, researchers measured blood flow to this region of the brain. They were most interested in the way the brain responded to a win or loss. The patients with the highest levels of fatigue experienced the smallest changes.

Research findings 

Because the basal ganglia is responsible for our individual motivation, it is believed that this lack of response when faced with an activity typically designed to increase motivation could be an underlying factor in the body’s response when affected with chronic fatigue syndrome.

In terms of the PET scan study, researchers expect this small study to provide the confirmation that PET scanning can objectively test for CFS. This could lead to more accurate diagnoses as well as the development of treatments and therapies that could provide better relief for this condition.

Both of these studies will lead to broader research on the brain and chronic fatigue syndrome. This will allow researchers and scientists to learn more about the direct cause of the condition as well as develop more effective treatments.

Is there a cure for chronic fatigue syndrome?

It is important to recognize that these are no known cures for CFS. The main goal is to instead alleviate the symptoms so there is less fatigue and pain throughout the day. Allowing for enough rest is also critical. Because overall tiredness and insomnia are common symptoms, it is easy to feel overly tired even with enough rest. That doesn’t mean that patients should ignore sleep.

Chronic fatigue syndrome is unfortunately not a cut and dry diagnosis. Working with your doctor to determine the best possible treatments is essential. The process will likely be different for each individual. However, a life with CFS doesn’t have to be limiting.

In the meantime, it is important for patients with chronic fatigue syndrome to learn as much as they can about holistic ways to treat the condition and lead as normal a life as possible. CFS can be debilitating. Any method that can help someone increase their energy level and reduce their pain helps even if there is not an FDA approved treatment on the market at this time.

Do you suffer from chronic fatigue syndrome? What has helped you find relief? Need advanced help? Talk to a pain specialist today!