ME/CFS – Much More Than Just “Fatigue”

“We all feel a little exhausted from time to time. You just need to take some time for yourself and get more exercise in the fresh air.” Have you ever received advice like this? It is not always helpful. Fatigue (weakness, exhaustion) can have many different causes, ranging from overwork and depression to anemia, an underactive thyroid, or ME/CFS. ME/CFS stands for myalgic encephalomyelitis/chronic fatigue syndrome. Myalgic = associated with muscle pain; encephalomyelitis = inflammation of the brain and spinal cord.

Although ME/CFS is sometimes referred to in German as a chronic exhaustion syndrome, fatigue is only one of its symptoms. It is often accompanied by severe pain, insomnia, cognitive impairment (e.g. reduced concentration or extremely increased sensitivity to stimuli such as noise and light), circulatory regulation disorders, and many other symptoms.

Above all, however, ME/CFS is characterized by a worsening of symptoms—often with a delay—after activities that may be entirely routine. This deterioration is called PEM (post-exertional malaise).

The causes of ME/CFS have not yet been sufficiently researched. The blood vessels, muscles, and nervous system, for example, may be affected. Autoimmune reactions—reactions in which the immune system targets the body’s own cells rather than an external invader—are among the possible causes being discussed. ME/CFS is usually triggered by infections, such as COVID-19, influenza, or the Epstein–Barr virus. Long COVID patients who experience PEM (i.e. worsening after exertion) often also have ME/CFS (as I do). In some cases, however, ME/CFS may also have been triggered by COVID-19 vaccination or other causes.
 
People with ME/CFS can be affected to very different degrees. While some people with “mild” disease may still be able to work full- or part-time (often only at the cost of completely giving up leisure activities), the most severely affected may spend the entire day in bed, in a darkened room and wearing headphones, because they need to be shielded from external stimuli as much as possible. This can even mean that a brief conversation or touch is already too much. The weakness can be so severe that even eating and speaking become difficult—and, in the most severe cases, no longer possible.

How Is the Diagnosis Made?

The diagnosis is made with the help of questionnaires. In addition, conditions that can cause similar symptoms (such as anemia) must be ruled out. Unfortunately, there are still only a few physicians who are truly knowledgeable about ME/CFS. Do you suspect that you might have ME/CFS? You can take a test at https://sgme.ch/icc. Of course, it does not replace a medical examination, but it can provide an initial assessment.

Do you also experience dizziness when standing up too quickly, or a racing heart, nausea, or shortness of breath when standing or walking for longer periods? Or can you concentrate significantly better when lying down or with your legs elevated than when sitting normally? If so, you may have POTS (postural orthostatic tachycardia syndrome). This is a circulatory regulation disorder in an upright position in which blood “pools in the legs,” leaving insufficient blood available to the brain. POTS is a common comorbidity of both ME/CFS and Long COVID. Diagnosis is based on symptoms and a standing test. Unfortunately, many cardiologists do not perform this test—and the results of all other examinations may be “normal.” As a result, POTS is diagnosed far too infrequently.

What Can Help?

Unfortunately, there is not yet a medication that can cure the disease, but there are a number of medications that may alleviate symptoms. Dietary supplements may also provide support—however, as an addition to medication, not as a replacement. For most dietary supplements, there is still very little data from clinical trials. An overview of potentially useful supplements can be found at www.praxisleitfaden.mecfs.de in the section on supplements.

From a therapeutic perspective, energy management (pacing) is particularly important: trying to manage the limited energy that remains so that the “battery” never runs completely empty. This means taking regular breaks throughout the day. If necessary, even individual activities need to be interrupted (for example, unloading the upper rack of the dishwasher first, then resting, and only afterward unloading the lower rack).

What does a “break” mean? This depends greatly on the severity of the condition and on the activity that came before it. After physical activity, lying down—or at least sitting down—may already be helpful. Ideally, you should not immediately reach for your phone; this is particularly important after mental activity. Ideally, you should actually do “nothing”—apart from perhaps meditation or a breathing exercise. This may also help calm the autonomic nervous system, which is often dysregulated.

Because symptoms can worsen after overexertion, advice such as “go for more walks” is not helpful, and the progressive exercise training commonly used in rehabilitation (GET = graded exercise training) can even lead to severe and, in the worst case, permanent deterioration. Rehabilitation is often recommended, but in many cases it may be more harmful: even when rehabilitation was specifically tailored to ME/CFS, 45% experienced deterioration and only 14% experienced improvement (Kedor 2026). Unfortunately, Germany follows the principle of “rehabilitation before pension,” which means many patients are compelled to undergo rehabilitation. At least when exercise capacity is very low (Bell score 30 or below), guidelines state that a certificate confirming inability to participate in rehabilitation should be issued.

Many people with ME/CFS are also prescribed psychotherapy based on the idea that their symptoms are psychological or psychosomatic in origin. However, ME/CFS is a physical illness. Psychotherapy therefore cannot treat the underlying disease—except, of course, in patients who also have a mental health condition in addition to ME/CFS. Many patients are also sad and distressed because of the illness—because they have lost their previous life and because of all the limitations and pain. In these cases, supportive psychotherapy can be helpful.

Because ME/CFS is a physical illness, programs such as “brain retraining,” which assume a dysregulation of the brain, cannot cure ME/CFS either. Programs that promise a cure (and charge a great deal of money for it) are not credible. However, individual elements of these programs, such as meditation, self-care, and mindfulness, can certainly be useful for symptom management and pacing (see above).

Life Becomes Difficult

People with ME/CFS not only suffer from the disease itself, but unfortunately often have to struggle with bureaucracy as well. Applying for a disability rating or a care level is already “a science in itself” even for healthy people. But with “brain fog” (as many affected people describe their cognitive impairment) and concentration difficulties, completing these applications becomes an ordeal. Yet that is not even the worst part. Unfortunately, assessors who decide on the degree of disability, care level, or reduced earning capacity pension often have very limited knowledge of ME/CFS. This relatively frequently results in patients having to take their cases to court.

Many medications that help ME/CFS patients are actually approved for other conditions. As a result, health insurance providers usually do not cover these costs.

Conclusion

ME/CFS is a very serious illness. Raising awareness is extremely important both among patients and, unfortunately, within the medical profession. With timely diagnosis, energy management (pacing), and medications that alleviate symptoms, stabilization and, in some cases, even significant improvement can often be achieved.

Further Information:

• www.praxisleitfaden.mecfs.de
• www.mecfs.de
• www.fatigatio.de
• www.sgme.ch