Chronic fatigue syndrome: living with constant exhaustion

What is chronic fatigue syndrome?

Chronic fatigue syndrome, also known as ME (myalgic encephalomyelitis), is a neuro-immunological illness, meaning that it affects both the nervous and immune systems. It's characterised mainly by persistent, pronounced fatigue following exertion, and by intolerance to exertion – whether physical, mental, emotional or sensory – or even a trigger such as exposure to light. Before their ME/CFS diagnosis, many people first experienced a viral infection such as glandular fever or COVID-19.

What's the difference between this and chronic tiredness?

Chronic tiredness is a non-specific symptom linked to many conditions or lifestyle factors. Most people recover once the cause is treated. Chronic fatigue syndrome, however, is a biological dysfunction with a wide range of symptoms and is recognised as a distinct diagnosis. Chronic tiredness can be limiting, but is generally not comparable to the fatigue experienced with ME/CFS.

Symptoms of chronic fatigue syndrome

Symptoms of chronic fatigue syndrome put significant restrictions on a person's daily life and, depending on severity, can make a normal life almost impossible. The key feature is post-exertional malaise (PEM), an overall deterioration after exertion that typically appears with a delay of 12 to 72 hours. Even minimal physical activity, mental effort or sensory triggers such as light and noise can intensify symptoms and lead to profound exhaustion. These phases can last for days, weeks or even months.

Post-exertional malaise as a symptom

• describes a marked worsening of existing symptoms
• usually appears 12 to 72 hours after physical or mental exertion
• can be triggered by minimal effort that would previously have caused no difficulty
• is disproportionately severe compared with the level of exertion
• lasts from hours to several weeks or even months due to impaired recovery
• can lead to a lasting deterioration in overall health

Other symptoms

In addition to post-exertional malaise and intolerance to exertion, people with chronic fatigue syndrome often experience a wide range of other symptoms. In total, more than 200 different symptoms have been identified, and no organ system remains consistently unaffected.

The most common symptoms include:

Triggers of chronic fatigue syndrome

Most people with chronic fatigue syndrome were physically and mentally resilient before falling ill. In most cases, the condition develops following a stressful or taxing event. Frequent triggers include viral infections such as influenza, Epstein-Barr virus (glandular fever) and COVID-19. Other stressful events (such as physical or psychological trauma) can also lead to the onset of the condition, including bacterial infections such as Lyme disease or Q fever, as well as hormonal or physical stressors such as pregnancy or childbirth.

The causes remain unclear

Although several triggers of the condition are known, the exact cause of chronic fatigue syndrome is still largely unclear. There is, however, growing evidence that ME/CFS involves dysregulation of the immune system and that autoimmune processes may play a role. Researchers also suspect that changes in stress hormones (cortisol) or in the mitochondria – the «powerhouses» of the cells – could be involved. Genetic factors and environmental influences are added areas of ongoing research. So far, however, no definitive conclusions have been reached. Studies show that women are affected around two to three times more often than men.

Diagnosis of chronic fatigue syndrome

Because the causes of ME/CFS are not yet clearly established, diagnosing the condition is challenging. There are no specific laboratory or blood tests, which makes it a diagnosis of exclusion. Doctors must first rule out other possible causes, such as anaemia, electrolyte imbalances, kidney or thyroid disease, inflammation, sleep disorders or side effects of medication.

The following criteria must be met for a diagnosis

• pronounced fatigue that doesn't improve with rest
• worsening of symptoms after exertion (post-exertional malaise)
• non-restorative sleep
  

At least one of the following signs must also be present

• cognitive impairments («brain fog»)
• dizziness or light-headedness when standing up, which improves when lying down

A diagnosis is made when these symptoms persist for at least six months, are clearly pronounced, and no other cause can be identified.

Assessing severity

To assess severity, the CFS Bell scale is often used. It rates everyday limitations from 0 (most severe, bedridden) to 100 (fully functional). Simple tests such as hand-grip strength can also provide clues about physical capacity. Grip strength is measured ten times at one-hour intervals. People with ME/CFS typically show a marked decline in strength compared with healthy individuals.

How is chronic fatigue syndrome treated?

Because there is currently no treatment that addresses the underlying cause of chronic fatigue syndrome, the focus is on relieving symptoms. The aim is to improve quality of life and help people manage daily activities more effectively. Individual symptoms such as sleep disturbances, pain or issues with heart rate regulation (orthostatic intolerance) can be treated specifically. Depending on the situation, medication for depression, sleeping difficulties or pain may be considered, as well as cognitive behavioural therapy for support. Avoiding further infections and maintaining good general health also play an important role.

Pacing as a treatment approach

A key part of treatment is often what's known as pacing. This helps people structure their activities so they stay within their individual limits and avoid worsening their symptoms through post-exertional malaise (PEM). The focus is on planned rest periods, adjusting how energy is used and recognising personal limits.

Supplements

Some people use dietary supplements such as magnesium, coenzyme Q10, selenium or tryptophan as part of ME/CFS treatment, although their effectiveness hasn't been fully scientifically proven.

Individualised therapy

Because ME/CFS presents differently in every person, treatment is highly individual. Different approaches may need to be tried in collaboration with the healthcare professional and adjusted regularly.

Alternative treatment methods

Naturopathic approaches such as ginseng, yoga or breathing techniques – including the Wim Hof method – may also be used, ideally under medical supervision. They can be helpful if individuals find them personally relieving or comforting. However, methods such as exclusion diets or so-called detox therapies should be avoided, as they are ineffective and may cause side effects.

What's the difference between long COVID and ME/CFS?

Long COVID refers to persistent symptoms following infection with the coronavirus (SARS-CoV-2). The symptoms often resemble those of chronic fatigue syndrome, such as concentration difficulties, fatigue or intolerance to exertion. In some cases, long COVID can develop into chronic fatigue syndrome. Studies indicate that around ten per cent of people with long COVID meet the diagnostic criteria for ME/CFS. However, for most people with long COVID, symptoms improve significantly over the course of about 12 months.