Treatment for ME/CFS

There is no known treatment that cures ME/CFS. The treatment options currently available aim to

• relieve the most severe symptoms,
• prevent PEM, and
• encourage people to trust how they feel, be mindful about their bodies, and react properly to any changes.

The crucial thing is to find things that help you cope with the symptoms in the long term and prevent them getting worse again and again. One way to do that is to work out how much activity is right for you without overdoing it. That can differ greatly from person to person.

It is also important to find doctors who understand ME/CFS. That goes for other healthcare professionals involved in the treatment too.

Although several studies have compared the pros and cons of various treatments, it’s difficult to assess them properly. This is partly because most of the participants had mild or moderate forms of the illness. It is also unclear whether the studies took a close enough look at any harmful effects the treatments might cause. So the findings don’t provide reliable answers about the effectiveness of the different ME/CFS treatments. There are also no approved medications for treating the illness.

Sometimes, a treatment might not be effective at all or might actually make the symptoms worse. The most suitable type of treatment will also depend on the person’s situation. So it’s important to find out for yourself over time what helps you best.

Pacing (also known as “energy management” or “activity management”) is about avoiding activities that make symptoms worse. The idea is to manage your level of activity by making adjustments so you stay within your limits and don’t “overdo” it. Examples include spreading activities across several days or asking someone to help you do them (like shopping). Some activities can be modified to make them less strenuous too. For instance, you can sit down when preparing food or lie down when working on a computer. It is also important to plan enough rest breaks.

“Activity” doesn't only mean physical activity. Mental activities like writing, reading or chatting can be tiring too. The same goes for things that are very emotional. People’s limits vary a great deal from person to person, and they partly depend on how severe the ME/CFS is.

It is useful to keep a record of your daily activities and their effects. You can use a diary or an app, for instance. That helps you see what is too much and what isn’t. Then you can make a plan – for example, a weekly schedule of the activities you want to do and the breaks you want to take to rest.

Depending on how you feel, you can do more or fewer activities than planned. One main part of the pacing approach is not fighting exhaustion or "soldiering on" despite feeling exhausted. Doing so can make the symptoms worse.

Experts and people with ME/CFS often recommend pacing. But the lack of good scientific research in this area makes it difficult to assess the pros and cons properly.

If you can do things like exercises or taking walks, you should always make a point of putting them in your daily schedule. It is important to know your own limits. The aim is to plan physical activity in a way that doesn't make the symptoms worse. Doing too much can cause the symptoms of ME/CFS to increase.

So it takes time to work out where your limits are. One way to do this is using an approach called “activation.” It involves gradually increasing your level of activity. This is best done in consultation with a doctor or physical therapist who understands ME/CFS. They can help you plan the activation steps and monitor how these changes affect you.

A number of studies have looked at the effects of planned, gradual increases in activity (“graded exercise therapy” or "GET"). The study participants had mild and moderate forms of the illness.

But it’s difficult to assess the pros and cons of activation. There’s a lot of debate about who might benefit from it and who it might even harm.

Cognitive behavioral therapy (CBT) aims to help people cope better with the restrictions and symptoms of the illness. The idea is to learn strategies to deal with the mental health impact. It also aims to reduce depressive thoughts and help you deal with any fears or anxiety.

Cognitive behavioral therapy is offered as a treatment for many chronic or severe conditions. Even if an illness isn’t caused by a psychological problem, the effects of the illness can have a big impact on mental health. At first, behavioral therapy involves trying to work out whether you have developed certain beliefs and habits that are making your life unnecessarily difficult or worsening problems that you already have. Then the aim is to change those beliefs and habits.

Research suggests that people with ME/CFS can benefit from cognitive behavioral therapy. Studies showed that it helped relieve exhaustion a little in ME/CFS patients and also enabled them to do everyday activities (like housework and meeting other people) slightly more often. Most of the people in these studies had mild to moderate ME/CFS.

There aren’t any medications specifically for the treatment of ME/CFS. But certain symptoms can be treated with medication. These include sleep problems, depression, pain, and circulation-related symptoms like dizziness. It is important to talk to a doctor before taking medication over the long term.

Not being able to get a good night’s sleep can be quite distressing. Many people with ME/CFS are light sleepers and keep waking up at night. Some of them lie awake a long time because their body’s sense of day and night is disrupted. Then they’re exhausted during the day. Others do get a lot of sleep but it’s not restful and they wake up feeling drained. As with other sleep problems, one option is to try out standard sleep management practices – even though there's a lack of good scientific research on their effect in ME/CFS. These practices include avoiding stimulants like coffee or caffeinated soft drinks just before going to bed, regularly going to bed at around the same time, and using relaxation techniques. Sleeping pills may be an option in some cases too.

But certain sleep management recommendations aren’t suitable for many people with ME/CFS. One example is the recommendation not to lie in bed during the day. So it’s important to look at your individual situation and decide what actually makes sense.

If you’re having trouble getting a restful night’s sleep, it may be due to other things, like obstructive sleep apnea. If you stop breathing for short periods of time at night, it makes sense to consider these types of related conditions too and get checked for them.

People with ME/CFS can use various supportive treatments that patients with other chronic illnesses use. These include mindfulness training, physical therapy, occupational therapy and nutritional therapy.

But there's hardly any research on how effective these treatments are in ME/CFS. So it’s impossible to say whether they will help and, if so, how much.

For people who are mostly bedridden, nursing care is important – such as help with personal hygiene and to prevent things like stiff joints, pressure ulcers, or thrombosis. They might need special aids like (electric) wheelchairs, electrically adjustable beds or drinking aids. In Germany and other countries, you can claim certain support services if you officially have a recognized level of disability and care requirements.

Some people try to relieve their symptoms with alternative, complementary, or natural treatments like acupuncture, homeopathy or herbal products. They sometimes pay a lot of money for them.

There is no scientific proof that these treatments have any benefits in people with ME/CFS. But they can have side effects and may end up being too much overall.