Support for people living with ME/CFS

People with ME/CFS have long-lasting symptoms that really limit what they can do in everyday life. They also have phases where the symptoms are even more severe, and everything is more difficult than usual for a few days or more. Some can’t really dress themselves, for example, or move around their home, or make something to eat. Even actually eating can be too much for them. People with very severe ME/CFS can hardly leave their bed.

The energy they do have has to be managed properly. That means “listening” to your body, knowing your limits, adjusting activities, and planning breaks to rest. During post-exertional malaise (PEM) phases, you should always be able to lie down. If possible, in a quiet room that can be darkened.

In phases when symptoms are severe, it’s extremely important to have help from other people because you may need assistance with almost all daily activities. People with very severe ME/CFS also need nursing care.

Many people with ME/CFS want to carry on working. But that tends to only be possible for those with a mild form of the illness in certain types of jobs. Adjustments sometimes have to be made. You might change what you do, where you work or when you work. That’s easier if the work can be done at home than if it has to be done elsewhere or if the work is physically demanding. Return-to-work programs are also available (like the Hamburg model in Germany). Severely disabled people have special rights, including better job protection and the right to an accessible workplace.

People with ME/CFS have to take a lot of time off work, sometimes several weeks at a time. Then it's a good idea to talk to your employer about how to handle this situation. It might be helpful to speak to your managers and coworkers, explaining the illness and the restrictions it causes.

But many people with ME/CFS can only work very little, or can no longer work at all. They’re forced to abandon their career plans and think about stopping work completely.

In Germany, people who can no longer work fully, or at all, for health reasons can apply for a special disability benefit (Erwerbsminderungsrente). That usually leaves them with quite a lot less money than before. It is a good idea to prepare for this change and get advice on what support is available.

Sometimes you can switch to a job that’s more compatible with the illness. It is important to have flexible working hours and be able to work from home and take breaks when you need them. To get a better work/health balance, some people go self-employed – even though that involves challenges of its own too. If you’re thinking of changing your job, it might be useful to ask an employment agency or a coach for advice.

People who have trouble walking or getting up might need aids like an (electric) wheelchair or walking frame. Drinking aids can make eating and drinking easier. Making changes in your home can help you remain as independent as possible. For example, it may be a good idea to change things in the bathroom and make all of the rooms wheelchair-accessible. Depending on your situation, it might make sense to get a hospital bed for your home. In Germany, certain medical aids (Hilfsmittel) are paid for by statutory health insurers if a doctor prescribes them.

It is also helpful to arrange your home to make daily activities as easy as possible. For instance, you could make sure that things you use a lot are always within reach.

If you can't leave your home, electronic communication devices are particularly important so you can stay in touch with family and friends. The internet and social media are good places to share experiences with other people affected by ME/CFS.

Some doctors offer telephone or video appointments. It is also possible to have a doctor visit you at home or to arrange special transport.

The purpose of rehabilitation is to help you recover from a serious illness and ensure you can return to work. In Germany, you have to apply to your health insurer or pension fund to attend a rehabilitation program.

There aren’t many rehabilitation programs specifically for people with ME/CFS, though. A lot of people worry that rehabilitation won’t actually help and might even be harmful. Some say their symptoms got worse afterwards. So it’s really important to talk to your doctor or health insurer about suitable rehabilitation options. More scientific research is needed to find out what ME/CFS rehabilitation programs should include.

In addition to the aids mentioned above, the following support is available, depending on the situation:

• Nursing care services
• Home help
• Disability benefit
• Support with childcare (for example, at a day care center)

You can also get your level of disability assessed and apply for a special ID card (Schwerbehindertenausweis) if you are classified as severely disabled. Holders of this card have special rights, like arrangements to compensate for disability-related difficulties, discounts, additional work leave, and better job protection.

Children and teenagers with ME/CFS should be given the opportunity to go to school if possible. If they’re off school for a long time, home tuition or online tuition needs to be organized. Social contacts and age-appropriate activities are important too.

Special allowances can be made in school, university or vocational training settings. Disability-related difficulties are taken into account here, including the effects on examinations and grades. These allowances have to be applied for – for example, by the parents of school children. They have to provide a medical report.

It is essential that teachers are properly informed about the illness. Otherwise, they can’t adapt academic requirements to the child’s needs and capabilities. One of the adjustments they can make is in PE lessons, to prevent the symptoms from getting worse due to too much physical activity. Sometimes it makes sense to give the child an exemption for PE, make their timetable flexible, and give them access to a quiet room.

The support groups and patients’ associations in Germany include:

• German ME/CFS Association (Deutsche Gesellschaft für ME/CFS e.V.)
• Fatigatio e.V.
• Lost Voices Foundation
• Munich Parents’ Association for Children and Teenagers with ME/CFS (Münchner Elterninitiative ME/CFS kranke Kinder und Jugendliche)

These groups provide information about the illness as well as opportunities to talk to other people affected by it. Various people and initiatives are also active in social networks.

In Germany, there are also a wide range of different services that provide individual advice and support if you are ill. These services are organized differently from region to region, and they are not always easy to find. You can use this list to help you find and make use of local services.