ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome)

The main symptom of ME/CFS is post-exertional malaise (PEM). This is where the symptoms get worse after physical or mental activity. Light activity is often enough to trigger it. Depending on how bad the ME/CFS is, that could mean a short walk, a shower or a conversation. Sometimes it takes a couple of days for PEM to develop after the activity, and it can last for days, weeks or even longer.

The symptoms of ME/CFS include:

• Extreme fatigue that you never used to have in the past, and that doesn’t really go away even if you rest. People with the condition are unable to go to work, school or meet up with friends and family – or they feel very drained afterwards if they do.
• Trouble getting a good night’s sleep. This includes problems falling asleep, waking up a lot during the night, and feeling just as tired in the morning as you were when you went to bed.
• Trouble concentrating, extremely slow thinking and poor short-term memory. Brain fog is common too, where you feel disoriented or have difficulty finding words.
• Circulation-related symptoms like dizziness, nausea, an increased pulse or a rapid heartbeat. These tend to happen when you’re sitting or standing, and they improve when you lie down (orthostatic intolerance).
• Pain (for example, in the head, joints, muscles or lymph nodes).

Other symptoms include things like increased irritability, digestion problems and flu-like symptoms.

There are different degrees of ME/CFS, from mild to very severe, depending on the type of symptoms and how bad they are.

In some phases, people can do an activity that's important to them without it causing any noticeable problems. But PEM may then kick in a few days later.

It isn’t clear what causes ME/CFS. Experts believe that changes in various organ systems (e.g. the immune and nervous system) play a role.

The illness often starts after a viral infection like mononucleosis (also called “mono” or glandular fever), influenza or COVID-19. It is thought that changes to the immune system and blood vessels might be involved, as well as hormonal and genetic factors. There is also some debate about whether physical injuries (for example, after an accident) and pollutants might trigger ME/CFS.

Based on international research, it’s estimated that around 2 to 4 out of 1,000 people in Germany have ME/CFS. Due to a lack of research, there aren’t any exact statistics for Germany. It is more common in women than in men.

ME/CFS usually starts quite suddenly, out of the blue. In rarer cases, it develops gradually. When the symptoms start to appear, many people can’t work out what’s causing them.

ME/CFS develops differently in different people over time. The symptoms can improve or disappear completely after a few years – especially in children and teenagers. But in adults, they tend to be permanent and sometimes get worse over time.

ME/CFS can have a major impact on your quality of life. Depending on how severe the illness is, you may find it very difficult or even impossible to do normal daily activities:

• People with mild ME/CFS can usually get by on their own, but many activities are much more difficult than before.
• People with moderate ME/CFS have difficulty leaving their home. Activities become very tiring, and they need long breaks to recover. They usually can’t work.
• For people with more severe ME/CFS, simple everyday tasks become extremely tiring – like getting dressed, taking a shower or cooking. Many are no longer able to leave their home, and some spend days or weeks mainly resting in bed.
• People with very severe ME/CFS need nursing care and a lot of support.

Three quarters of people with ME/CFS have a mild or moderate form. Roughly one quarter are hardly able to leave their home, or can't leave it at all. Some are even bedridden.

The distress caused by the illness also increases the risk of mental health problems like depression or anxiety.

There is no one test for the diagnosis of ME/CFS. Symptoms like constant exhaustion or pain can be caused by various other things: ME/CFS is rarely the reason. Because of this, you might have to consult different types of doctors and have a number of tests and examinations to detect or rule out other conditions.

This typically includes:

• Assessment of medical history: The doctor will ask about previous and current medical problems, how severe the symptoms are, what triggers them, and how they’re affecting your day-to-day life. It is particularly important to find out whether you have post-exertional malaise (PEM).
• Physical examination
• Testing for changes related to blood pressure and heart rate after standing up (Schellong test)
• Blood tests and perhaps urine tests

A test to check your hand grip strength can be useful too. Sometimes ECGs, x-rays or computed tomography (CT) scans are done to detect or rule out other illnesses as well.

People generally go to their family doctor first. If they need more tests, their doctor refers them to specialists for neurology, internal medicine, psychosomatics or other fields of medicine.

There are currently only a few places in Germany that are specialized in diagnosing and treating ME/CFS.

Children and teenagers go to their pediatric practice.

There is currently no cure for ME/CFS. There also isn’t any medication to treat it with. Some medications are being tested in research, but it’s too early to say how effective they might be. However, it is possible to treat specific symptoms like pain, sleep problems or circulation-related symptoms.

Research has looked into various ways to cope with the restrictions caused by ME/CFS. But it’s difficult to assess the pros and cons because many questions remain unanswered – especially when it comes to people with severe ME/CFS. The possible approaches include:

• Pacing (also called “energy management” or “activity management”). The idea behind this is to manage your energy levels by adjusting your activities and spreading them out across the day. This helps to make sure you don't “overdo” it, to try to prevent your symptoms from getting worse.
• Depending on your situation, it might be possible to slowly and gradually increase your level of activity (“activation therapy”). But it’s important to do this in a way that doesn't make the symptoms worse and trigger PEM. So activation should be done under the supervision of a doctor or physical therapist. But there are still many unanswered questions about the limits of activation programs like graded exercise therapy (GET).
• Cognitive behavioral therapy (CBT): CBT aims to help people cope better with the emotional distress caused by the illness. You learn strategies to deal with the symptoms and effects, such as depression and anxiety. The strategies may include things like developing a better feel for the effects of ME/CFS and learning to manage levels of activity properly.

Other treatments to help people cope include mindfulness training, physical therapy and occupational therapy. But there’s hardly any research on how effective they are here.

ME/CFS might be caused by different things in different people. The type of symptoms and their severity vary a lot too. So it’s perhaps not surprising that different people find that different things help (or don't help) them.

People who are mostly bedridden usually need nursing care to help them with their personal hygiene and to prevent things like stiff joints, pressure ulcers and thrombosis.

Rehabilitation generally aims to help you learn how to cope with your illness, understand it better, and reduce the symptoms. Another aim is to make sure you can carry on working.

People who have ME/CFS can have rehabilitation treatment too. The important thing is to find a program that meets your needs and is specifically designed for ME/CFS. There are currently no lists of ME/CFS rehabilitation providers in Germany. Unsuitable rehabilitation programs can make the symptoms worse.

A lot of people with ME/CFS have been unwell for many years and have already received various wrong diagnoses. Some of them feel misunderstood by their doctors. They feel that their symptoms aren’t taken seriously or are considered to be "all in their head." Some have also been given inappropriate treatment.

ME/CFS makes it difficult (or impossible) to do activities – and doing activities can make your symptoms worse (often called a “crash”). It is important to know your own limits and learn how you can avoid PEM. Planning rest breaks is important, for example. With time, it’s possible to cope better with the illness despite all the restrictions it brings.

Things than can help in day-to-day life include:

• Adapting your home to make sure you can move around easily
• Aids like (electric) wheelchairs or walking frames
• Using digital communication tools
• Home visits by your doctor or patient transport services
• Nursing care support

Whether or not you can continue working will depend on your job and the severity of your ME/CFS. It is generally easier for people in office jobs to make adjustments to their role or working environment – for instance, by working from home. School children can be taught at home.

Depending on your situation, the following additional support may also be available:

• Home help
• Disability benefit
• Help with childcare
• Making special allowances that take your difficulties into account in school, university or vocational training settings.

People who apply for severe disability status may be able to claim various types of support.

As well as suitable health care and assistance, support from family and friends is particularly important. It can also be useful to meet other people affected by ME/CFS – for example, in a support group or on social media.

When people are ill or need medical advice, they usually go to see their family doctor first. You can read about how to find the right doctor in our topic "Health care in Germany" – and our list of questions can help you to prepare for your appointment.