For family and partners

Budgeting energy together

Energy is often in short supply and fluctuates from day to day. For some people, symptoms get worse after even minor exertion, often not until hours or days later. This is called PEM (post-exertional malaise).

That is why many budget their energy carefully. This is called pacing: not training, not a cure. It lowers the risk of setbacks, but it does not always prevent them.

• Plan important things together for a good time of day.
• Make rest before and after exertion a fixed part of the plan.
• A good day does not mean everything is possible again.

Avoiding overexertion

With PEM, overexertion is dangerous. A crash, meaning a severe worsening, can last days or weeks. It can also trigger a relapse or cause a lasting worsening of the condition. As a result, the illness can become chronic and more severe.

When the illness is very severe, even a conversation or a touch can be too much.

• Do not blame the person after a crash. It is never their fault.
• Keep visits short and calm, and help with cancellations.
• If the person is sensitive, speak softly, move calmly and avoid bright light.
• Spread appointments across the week and ask for phone or video appointments.

Sources: D-A-CH consensus statement on ME/CFS, 2024

Taking tasks off their hands

Housework, appointments and paperwork take a lot of energy. Many doctors, insurers and authorities still know very little about these illnesses. That is why those affected often meet with a lack of understanding and doubt, until some begin to doubt themselves.

Believe the person. Many have to fight for recognition for a long time. A rejection by the Swiss disability insurance (IV) is not always final. Fight alongside them if they want you to.

• Take over the shopping, cooking, cleaning or washing-up.
• Go with the person to appointments, assessments and expert examinations, and take notes if they want. When exhausted, they can hardly stand up for themselves there.
• Help with the symptom diary, letters, forms, deadlines and calls.
• If someone is signed off sick for a long time, it is important to register early with the IV.

Finding suitable doctors

According to current scientific knowledge, Long COVID and ME/CFS are physical illnesses and not psychosomatic. The World Health Organization (WHO) classifies ME/CFS among the diseases of the nervous system. Routine tests often cannot detect either illness, and in Switzerland only a few doctors have experience with them. Specialised outpatient clinics often have long waiting lists. Because of high demand, some are temporarily not accepting new patients.

The illnesses are therefore often not recognised or wrongly classified. Some hospital outpatient clinics, too, take a psychosomatic approach. With PEM, advice such as moving more or building up exercise can cause a worsening of the condition. As a result, assessments sometimes drag on for years, without a diagnosis and without effective help.

After such experiences, many are very reluctant to go to a family doctor’s practice or to hospital at all any more. Take this seriously and support the person directly. The search takes a lot of energy that those affected often do not have. If the person wants you to, you can take on a lot:

• Ask patient organisations and other people affected about doctors with experience.
• Call practices, ask about waiting lists and whether they are taking new patients, and have the person put on a waiting list.
• Before the first appointment, ask how the clinic works. Services that treat Long COVID and ME/CFS as physical illnesses are a good choice.
• Briefly summarise the course of the illness, symptoms and exertion limits in writing. This makes the appointment easier and saves energy.
• If a doctor lacks experience with these illnesses, help to find another specialist.

Sources: WHO: ME/CFS in the ICD, D-A-CH consensus statement on ME/CFS, 2024, NICE guideline NG206 on ME/CFS, 2021, Swiss Federal Council report on post-COVID-19 condition, 2023

Supporting recovery and the person’s own goals

Keep the possibility of improvement or recovery in view, without pressure. The illness sets the pace, and with PEM, setbacks are part of its course.

Take seriously the wishes and goals that the person themselves expresses, including work-related ones. Support them in this, for example with a return to work on a light workload, working from home or with adapted tasks, if they want to and their exertion limits allow it.

What those affected wish for

• Instead of“Don’t make such a fuss.”Better“I believe you. You don’t have to justify yourself.”
• Instead of“It’ll all be fine again.”Better“I’ll stay by your side, however long it takes.”
• Instead ofReacting with disappointment or annoyance when plans are cancelled.BetterAccept the cancellation. The person is sorrier about it than anyone.
• Instead ofMaking decisions without involving the person.BetterPlan together. The person knows their limits best.

When a child falls ill

Children and teenagers can also get Long COVID or ME/CFS. For some, even a school test can trigger a crash, often not until the next day. Believe the child: they know best how they are feeling. Long Covid Switzerland has information for families at long-covid-info.ch/kids.

Sources: Swiss Federal Office of Public Health: information sheet for schools, 2024

When the relationship changes

The illness often changes the relationship too. Sometimes the healthy partner becomes a carer, and the person who is ill can feel dependent. This puts a strain on both, and some relationships break down because of it.

Looking after yourself

Family members often carry a heavy load, and sometimes children help a lot too. Some of those affected feel guilty about this. Get support early, because your strength is limited too.

• The association ME/CFS Schweiz (mecfs.ch) also advises family members.
• Long Covid Switzerland (long-covid-info.ch) offers information and useful contacts for family members.