Chronic fatigue syndrome

Chronic fatigue syndrome (CFS) is characterized by severe, persistent fatigue that severely restricts normal everyday activities. Even rest periods and sleep do not improve the condition. 

If muscle pain is also experienced, the syndrome is referred to as myalgic encephalomyelitis (ME).

CFS is often preceded by an infectious disease involving viruses, bacteria or parasites. If the symptoms last for more than six months, the condition is referred to as ME/CFS syndrome.

What is the difference between fatigue and chronic fatigue syndrome?

People with chronic conditions such as cancer, rheumatoid arthritis or multiple sclerosis also battle with severe exhaustion (fatigue). This kind of fatigue generally improves when the underlying condition is treated.

Whereas physical activity is often beneficial for people who experience this kind of fatigue, the opposite is true for those with chronic fatigue syndrome. Only few people with fatigue actually fulfill the diagnostic criteria for CFS.

Severe exhaustion (fatigue) is a typical sign of chronic fatigue syndrome (CFS). This often initially occurs following an infection, a phase of physical overexertion or severe stress.

One characteristic of the condition is that the symptoms get worse the day after exertion. Doctors refer to this as post-exertional malaise (PEM). This can last for days or even weeks.

People with severe CFS are so exhausted that they can barely get out of bed.

Other symptoms of CFS include:

• concentration disorders and memory problems
• sleep disorders and non-restful sleep
• joint pain, muscle pain and headaches
• intestinal complaints
• dizziness
• cardiovascular weakness, palpitations when getting up
• vulnerability to stress
• hypersensitivity, especially to light and sounds
• frequent, long-lasting infections
• allergies and food intolerances

The symptoms can vary greatly and temporarily improve and worsen again.

Why and exactly how chronic fatigue syndrome (CFS) occurs is currently unknown. Some experts believe it has a single trigger; others believe several factors have to come together.

Potential triggers

Viral infections, the immune system and genetic factors seem to play a role in the development of CFS. Other triggers that are discussed include:

• infections
• environmental toxins
• vaccinations
• accidents
• highly stressful psychological experiences 

Findings in people with CFS

Numerous observations have been made and various explanations have been provided for the different symptoms. The following could be determined during examinations of people with CFS:

• heightened concentrations of inflammatory messengers in the blood
• elevated free radical levels: these are specific oxygen compounds that damage the body’s own cells and tissue.
• heightened permeability of the intestinal wall, which can result in a change to the composition of antibodies in the blood
• autoantibodies formed by the immune system that are directed against the body’s own nerve cells and messenger substances
• impaired functioning of the brain cells that support and supply the nerve cells, resulting in overstimulation and inflammation
• imbalance of messenger substances such as serotonin and cortisol, which can manifest itself through feelings of severe exhaustion

Chronic fatigue syndrome (CFS) can affect people of all ages, including children. The average age at the time of diagnosis is 30 to 40 years.

Women are up to four times more likely to have CFS than men. In the case of children, on the other hand, boys and girls are equally likely to develop the condition.

There are no reliable statistics on the precise number of people with CFS. This is primarily because there are various definitions as to when someone experiencing fatigue actually has chronic fatigue syndrome.

Chronic fatigue syndrome (CFS) can have various outlooks.

Up to a third of people with CFS recover within the first five years. Even after this though, they often still need more breaks and rest periods than healthy people.

In other people with CFS, the symptoms can persist for years. They can temporarily disappear or get worse again. Often, it is impossible to predict when people will have good or bad days.

Only about half of people with CFS are able to resume work part or full time. Up to a quarter of those with the condition are unable to get out of bed or leave their home for a long time. Some require a wheelchair.

People with CFS can be in need of care.

As the condition progresses, people with CFS can often develop depression or anxiety disorders and feel under pressure. Balancing out their commitments and desires with the energy available to them is one of their everyday challenges.

It is often difficult to draw a line between chronic fatigue syndrome (CFS) and other fatigue conditions.

At present, there is neither a clear disease marker nor officially stipulated diagnosis criteria for CFS. It can therefore take a long time to precisely diagnose the condition.

Diagnostic criteria

The following symptoms must be present for a diagnosis:

• The state of fatigue must have persisted for more than six months and not be explainable by other health conditions.
• People with CFS can say exactly when the state of fatigue first began. Their everyday activities are also severely restricted compared to the way they used to be.
• Physical or mental exertion causes the condition to significantly deteriorate.
• Circulatory problems when moving from a sitting or lying to a standing position can trigger deterioration.
• Breaks, sleep and rest periods do not improve the symptoms.

Medical examinations

During a physical examination, a doctor will measure the blood pressure while the patient is lying down, sitting and standing. The blood values are also routinely tested.

The doctor will often arrange numerous other tests to determine whether a previously undetected health condition is causing the fatigue.

Chronic fatigue syndrome is only diagnosed if no other cause can be found.

At present, there is no cure for chronic fatigue syndrome (CFS).

Several forms of medication that combat viruses and affect the immune system are being tested within the scope of scientific studies.

One example is the active ingredient rintatolimod. This reduces the level of inflammatory messengers in the body and helps restores balance to the immune system.

A stool transfer may also help. This involves stool from a healthy donor being “implanted” in the patient’s intestines. However, there are no results to date that definitively prove the benefits of this.

Symptomatic treatment

In addition, various forms of medication are used to treat the existing symptoms such as pain, sleep disorders, anxiety disorders or depression. The medication used includes:

• non-steroidal anti-inflammatory drugs (NSAIDs) and opioids
• sleeping pills
• stimulants
• certain antidepressants

Physical activity

The avoidance of physical, mental and emotional exertion that worsens the symptoms is recommended. Despite this, a physical activity program can help improve fatigue.

How much activity is good for the body differs from one person with CFS to the next.

Psychotherapy, physiotherapy and occupational therapy

Cognitive behavioral therapy can help people make effective use of the energy available to them. Psychotherapy can help them deal with the consequences of the condition (“coping mechanisms”).

Occupational therapy and physiotherapy tailored to the patient enable them to become more mobile again. Relaxation techniques, massages, acupuncture, yoga, tai chi or meditation can also positively affect the condition.

Diet

There are no specific dietary recommendations. Experts simply advise maintaining a balanced diet. Dietary supplements such as vitamins, omega-3 fatty acids or similar have yet to be proven to have a clear benefit.

An important first step for people with chronic fatigue syndrome (CFS) is to receive the diagnosis and be able to give the condition a name.

Even if physical examinations, laboratory tests and imaging procedures do not show any abnormalities, this does not mean that patients are imagining the symptoms.

It is therefore imperative that not only therapists but also the patient’s partner, family and friends recognize the disease and respect the patient.

Often, people with CFS were previously very active. They therefore find it extremely difficult not to be able to complete their professional duties, enjoy their free time and fulfill their domestic obligations in the same way they used to be able to.

A confidant with medical experience can provide important support as people learn to deal with their condition and make effective use of the energy available to them.

Consistent sleep hygiene is beneficial to people with CFS.

Measures for improving sleep

The following measures help to achieve a normal day-night rhythm and improve sleep quality:

• avoid coffee entirely if possible
• do not take a nap after 3 p.m.
• an hour before going to bed, only do restful activities
• spread activities out throughout the day so they do not aggravate the symptoms
• get some natural light in the morning, ideally outside or directly in front of a window
• use earplugs or other noise protection measures to prevent noise exposure
• ensure darkness at night
• look for something calming to do if experiencing insomnia
• have a carbohydrate-rich snack before going to bed

Self-help groups offer people with chronic fatigue syndrome and their relatives a way of obtaining information and advice, and of sharing personal experiences.

Further information about the clinical picture can also be found on the websites of interest groups and university hospitals.

You can find suitable self-help services via a database on the National Contact and Information Point For Encouraging and Supporting Self-Help Groups (NAKOS) website.

Information about the clinical picture for chronic fatigue syndrome can be obtained from the German Society for ME/CFS (Deutsche Gesellschaft für ME/CFS e.V.) and the Charité Fatigue Center (Charité Fatigue Centrum).