For authorities and professionals

Key facts about the illness

Long COVID, officially called post-COVID-19 condition, is a physical illness that can affect several body systems. Some of those affected develop ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome), a severe, chronic, physical multisystem illness. The WHO classifies ME/CFS among the diseases of the nervous system (ICD-10 G93.3, ICD-11 8E49).

Fatigue (severe exhaustion caused by the illness) is one of the symptoms with the greatest impact in Long COVID, and especially in ME/CFS. But it is not the illness itself. For some, even minor exertion makes symptoms worse, often not until hours or days later. This is called PEM (post-exertional malaise) or exertion intolerance.

PEM is the hallmark of ME/CFS. With PEM, overexertion is dangerous: a crash can last days or weeks or cause a lasting worsening of the condition. As a result, the illness can become chronic and more severe.

• Symptoms and capacity fluctuate, often from day to day.
• Appointments, forms and long conversations can also trigger PEM.
• Exertion limits are caused by the illness, not a matter of willpower or motivation.

Sources: D-A-CH consensus statement on ME/CFS, 2024, WHO: ME/CFS in the ICD

What those affected often experience

Long COVID and ME/CFS are still often not recognised as physical illnesses. Those affected therefore often meet with doubt, until some begin to doubt themselves.

Many doctors, insurers and authorities still know too little about these illnesses. Those affected pay the price.

• Expert reports, too, often wrongly classify the symptoms.
• In rehabilitation, many are told to push beyond their limits. Afterwards, many are worse, and sometimes the worsening lasts. The discharge report often does not mention this adequately. Sometimes it contains an incorrect diagnosis, with consequences for daily sickness benefit insurance and the Swiss disability insurance (IV).
• Claims with the IV and daily sickness benefit insurance often take a long time. Many experience them as a fight for recognition.
• Some are declared fit for work despite being signed off sick.

Sources: Swiss Federal Council: report on post-COVID-19 condition, 2023, Rehabilitation survey 2024 (Long Covid Switzerland, ME/CFS Schweiz, SGME), Beobachter, 2022, SRF Kassensturz, 2024

When assessments make people sicker

The Schweizerische Gesellschaft für ME & CFS surveyed people affected by the illness who had applied for a disability pension. Most said the effort of the process had made their condition worse. For more than one in five, the worsening was severe and lasting.

According to the D-A-CH consensus statement (Germany, Austria, Switzerland), the survey reveals a major problem. In pension proceedings, insurers know too little about PEM. The statement also warns against the cardiopulmonary exercise test (CPET) outside of studies. In ME/CFS, it can cause a lasting worsening of the condition.

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

Caution about “Brain Retraining”

Programmes such as “Brain Retraining” are now also offered by hospitals. There is no evidence that they cure Long COVID or ME/CFS. The UK NICE guideline on ME/CFS explicitly advises against the “Lightning Process”, one such programme, and against exercise that is increased in fixed steps.

So anyone who declines or stops such a programme is not refusing a treatment that has been proven to work. With PEM, pressure to be more active can cause a severe worsening, in some cases a lasting one.

Sources: NICE guideline NG206 on ME/CFS, 2021, Long Covid Switzerland: position statement on biopsychosocial and neuroplastic models, 2026, SGME and ME/CFS Schweiz: statement on biopsychosocial and neuroplastic models, 2026

Assessing fairly

• Instead of“It’s psychological.”BetterTaking the physical illness seriously. Psychological strain can follow as a consequence.
• Instead ofJudging someone’s capacity from normal test results or a good appointment.BetterAsking in detail how the person is in the days after exertion.
• Instead of“You need to exercise.”BetterRespecting limits, because with PEM, moving more can cause a worsening, even a lasting one.

Adapting appointments and assessments

• Short or split appointments with breaks, in a quiet room where the person can lie down.
• Phone, video or home visits if the journey is too much.
• Using existing medical reports and symptom diaries instead of long interviews.
• Checking whether, for people who are severely affected, a decision can be made on the basis of the existing medical records. A few IV offices already do this in individual cases, but most do not yet.
• Summarising key points in writing, because concentration and memory are often affected.
• Allowing a trusted person to be present if the person affected wishes.
• One fixed contact person who helps with organising.

Sources: NICE NG206, UK guideline on ME/CFS

What those affected find helpful

• Listening, believing, being honest about what is not yet known, and referring on when needed.
• Detailed medical reports on exertion limits and PEM. They support those affected in dealings with the IV and insurers.

Sources: Swiss study on ME/CFS, 2023, UK study on Long COVID, 2020

Supporting the search for specialists

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 in diagnosing and treating 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, unsuitable recommendations such as increasing activity or building up exercise can cause a worsening of the condition, in the worst case a lasting one. Assessments sometimes drag on for years, without a diagnosis and without effective help.

After such experiences, many are very reluctant to visit a family doctor’s practice or a hospital at all any more. This issue must be taken seriously. Those affected need direct support, including with the search for suitable specialists:

• Actively helping with the search for doctors experienced in Long COVID and ME/CFS, for example with addresses, contacts or referrals.
• When making referrals, choosing outpatient clinics that treat Long COVID and ME/CFS as physical illnesses.
• Involving suitably experienced specialists in assessments and expert reports.
• Taking waiting lists and freezes on new patients at specialised outpatient clinics into account where deadlines are concerned.

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 people’s own goals

The goal remains a possible improvement or recovery, at the pace the illness allows. With PEM, setbacks are part of the course of the illness.

• Acknowledging, taking seriously and supporting work-related wishes and requirements expressed by those affected themselves, such as a reduced workload, working from home or adapted tasks.
• Aligning integration measures with exertion limits, not with a fixed plan of step-by-step increases.
• Planning together with the person affected. Decisions remain with them.

Sources: NICE guideline NG206 on ME/CFS, 2021

Simple support first

Most of those affected manage their own affairs. Often it is only about a few things: letters, forms, phone calls, appointments or deadlines. Simple, unbureaucratic support is usually enough for this.

Social services must offer this support themselves instead of initiating a deputyship straight away, for example by helping to fill in applications, meet deadlines and call insurers, or by accompanying the person to appointments. This is part of their mandate under the principle of subsidiarity.

This matters because many of those affected recover partly or fully and later want to return to work without additional hurdles. Simple arrangements can be ended at any time and do not require any official measure.

• Social counselling from the municipal social services or an advice centre: applications, deadlines, finances, contact with insurers.
• A power of attorney for a trusted person, limited to specific matters such as post, insurance or banking. It can be revoked at any time.
• Help from family and friends with letters, forms and appointments.
• Authorities and insurers can accept powers of attorney without fuss and communicate directly with the trusted person.

Assistance deputyship when no support network is available

If no support network is available and the person affected wishes to be accompanied, an assistance deputyship (Art. 393 Swiss Civil Code) can be an option, including on a temporary basis.

It is established by the Child and Adult Protection Authority (KESB) only with the person’s consent. The person can also apply for it themselves. An assistance deputyship does not restrict the person’s capacity to act. Unlike in other forms of deputyship, the deputy does not represent the person but assists them, for example with letters, forms and appointments. Decisions and signatures remain with the person affected. The measure is terminated as soon as it is no longer needed.

Both require well-trained social workers and deputies who understand Long COVID and ME/CFS. They know that even phone calls, appointments and long letters cost energy and can trigger setbacks. They communicate briefly and in writing, plan appointments flexibly, at home, by video call or by phone if needed, and take the illness seriously.

Sources: Swiss Civil Code, Art. 393 (assistance deputyship)

The federal government’s national strategy

In September 2025, the Swiss Parliament instructed the Federal Council to develop a national strategy on ME/CFS and Long COVID. It is meant to improve the health situation of those affected. The Federal Office of Public Health (FOPH) is currently preparing it, together with experts from medicine and nursing, insurers, the cantons and patient organisations.

Many people affected place little hope in this strategy. Patient organisations, especially Long Covid Switzerland, have campaigned for it from the start. They are taking part in developing it and are putting a lot of energy and work into it, so that the experiences of those affected are taken into account.

Sources: FOPH: National strategy on ME/CFS and post-COVID-19 condition (in German), Long Covid Switzerland: Council of States backs the national strategy, 2025 (in German)

Guidelines and points of contact

• The D-A-CH consensus statement is also aimed at medical assessors.
• Swiss recommendations for primary care (2023) advise systematic monitoring of exertion intolerance.
• Patient organisations provide information at long-covid-info.ch, mecfs.ch and sgme.ch.

Sources: D-A-CH consensus statement on ME/CFS, 2024, Swiss recommendations for primary care, 2023 (PDF), FOPH: What is the FOPH doing?