# Long Covid & ME/CFS verstehen – information and explainer video in 5 languages

> A calm website and animated explainer (about 3.5 minutes) for family, friends, employers, colleagues, authorities and health professionals of people with Long COVID and ME/CFS. Long COVID and ME/CFS are physical illnesses that affect several body systems; fatigue is one symptom, not the illness itself. Key points: post-exertional malaise (PEM) means symptoms worsen after even small physical, mental, emotional or social effort, often hours or days later; repeatedly crossing one's limits can cause a lasting worsening. Pacing is not a cure. The site centres the experiences of affected people in Switzerland: years without a diagnosis, not being believed (medical gaslighting), hurdles with insurers and authorities, and why brain retraining is no cure. It explains how family, friends, workplaces and authorities can support. Free to share unchanged and non-commercially; credit is appreciated but not required. Concept, website and video: Sascha “Sash” Wegmüller, who has lived with post-COVID for six years. A private, non-commercial initiative from Switzerland. Contact: info@longcovid.care.

Full text of all pages in all five languages: https://longcovid.care/llms-full.txt

## Pages (English)
- [Long COVID & ME/CFS](https://longcovid.care/en/)
- [Understanding Long COVID and ME/CFS](https://longcovid.care/en/understand/)
- [What people affected go through](https://longcovid.care/en/experiences/)
- [How you can help](https://longcovid.care/en/help/)
- [For family and partners](https://longcovid.care/en/help/family/)
- [For friends and acquaintances](https://longcovid.care/en/help/friends/)
- [For employers and teams](https://longcovid.care/en/help/work/)
- [For authorities and professionals](https://longcovid.care/en/help/authorities/)
- [Where to get help and information](https://longcovid.care/en/resources/)
- [Share and pass it on](https://longcovid.care/en/share/)
- [Download the video](https://longcovid.care/en/download/)
- [About this project](https://longcovid.care/en/about/)
- [Legal notice and privacy](https://longcovid.care/en/legal/)

## Other languages
- Deutsch: https://longcovid.care/
- Français: https://longcovid.care/fr/
- Italiano: https://longcovid.care/it/
- English: https://longcovid.care/en/
- Español: https://longcovid.care/es/

YouTube channel: https://www.youtube.com/channel/UCwsinKrdUDlaQHPrZovyd1w

## Questions and answers (English)
### What is Long COVID?
Long COVID is a physical illness that follows an infection with the coronavirus. The term Long COVID is used when symptoms last for more than three months after a confirmed or suspected infection and cannot be explained by anything else. This is how the World Health Organization (WHO) defines it, and Long Covid Switzerland uses it in the same way. Other names for it are post-COVID, post-COVID syndrome or post-COVID condition. The Federal Office of Public Health (FOPH) uses the term post-COVID-19 condition. Long COVID can also develop after a mild infection and can affect people of any age.
Long COVID is a multisystem illness. It throws different body systems out of balance, for example the nervous system, immune system, heart and circulation, breathing, digestion and metabolism. More than 200 different symptoms have been described.
At the centre are four core symptoms:
– Fatigue, meaning exhaustion caused by the illness
– Circulation problems when standing or sitting, for example a racing heart or dizziness
– A severely reduced capacity for exertion
– PEM, the worsening of symptoms after exertion
Problems with concentration and memory, shortness of breath, pain and sleep problems are also common.
Long COVID can become chronic and last for many years. Some people affected have been ill since the start of the pandemic, that is, for more than six years. The course of the illness varies greatly. The chances of improvement are best in the first 6 to 12 months, with plenty of rest, pacing and symptom relief. That is why support is so important, especially at the start. Some of those affected develop ME/CFS.

### What is ME/CFS?
ME/CFS stands for myalgic encephalomyelitis / chronic fatigue syndrome. It is a severe neuroimmunological illness that affects many systems of the body. The World Health Organization (WHO) classifies it as a disease of the nervous system. ME/CFS usually begins after an infection, for example after COVID, glandular fever or flu. Some people with Long COVID develop ME/CFS. Long COVID and ME/CFS are not the same thing.
Its hallmark is PEM, post-exertional malaise: even small physical, mental or emotional efforts can make symptoms much worse, often only hours or days later. This worsening can last days, weeks or longer.
There are also many other symptoms, for example:
– fatigue: severe exhaustion that does not improve with rest or sleep
– unrefreshing sleep
– problems with thinking, concentration and memory (“brain fog”), such as difficulty finding words
– circulation problems when standing or sitting, for example a racing heart, dizziness or fainting
– muscle and joint pain, headaches
– strong sensitivity to light, noise, smells or touch
– flu-like symptoms such as a sore throat, tender lymph nodes or feeling feverish
– muscle weakness and difficulty regulating body temperature
– digestive problems and new intolerances
Which symptoms occur, and how severe they are, varies greatly from person to person. They often fluctuate a lot, even within a single day. There are mild, moderate, severe and very severe forms. Even a mild form clearly limits everyday life. People who are severely affected can hardly leave the house or their bed. People who are very severely affected often lie in a darkened room, can barely tolerate light, sound or touch, and need help even with eating and personal care.
There is no simple test yet. Doctors make the diagnosis using defined criteria and by ruling out other causes. So far there is no treatment that cures it. What matters is pacing, which means not going beyond your own limits, and relieving symptoms.

### What is fatigue?
Fatigue is a symptom, not the illness itself. In Long COVID, and especially in ME/CFS, it is the best-known symptom and often the one with the greatest impact. But it is not the only one.
It means severe exhaustion caused by the illness. It is more than ordinary tiredness and out of all proportion to the effort. Sleep and rest are often not enough for recovery. Concentrating can also be very draining.
That is why you can’t compare it with your own tiredness.

### What is PEM?
PEM stands for post-exertional malaise. It means that symptoms get much worse after exertion. Even minor exertion can be enough, whether physical, mental, emotional or social. The worsening often doesn’t come until hours or days later.
This is also called a crash. It can last days, weeks or longer. But it can also lead to a relapse or a permanent worsening. As a result, the illness can become chronic and more severe.
That is why going beyond your own limits is dangerous with PEM. Not everyone with Long COVID has PEM.

### How much does the illness vary?
A great deal. Some have milder symptoms, others are severely limited in everyday life. People who are severely affected can barely leave the house or get out of bed and depend on help.
Energy and symptoms fluctuate, even from day to day. What was possible yesterday can be too much today. With many people, you can’t tell they are ill by looking at them. Someone who laughs and chats can still be seriously ill.

### Are Long COVID and ME/CFS physical illnesses?
Yes. 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. But the illnesses can be a heavy emotional burden. This is also due to outside circumstances: people affected still face major obstacles in society, with doctors, authorities and insurers. Many go through an odyssey lasting years before they finally get the support they need. This affects every area of life.
Blood tests and other standard tests are often normal. There is no simple test yet. The symptoms are real all the same. Because this is still not well enough known, the illnesses are often not recognised or wrongly classified.
For many, this becomes a fight for recognition. Many doctors and authorities still lack knowledge of these illnesses. In 2023, the Swiss Federal Council confirmed that limited knowledge in GP practices made it harder to diagnose and treat Long COVID.

### Does moving more help?
Not as general advice. With PEM, pushing through or moving more can worsen the condition, even permanently. In that case, guidelines advise against exercise programmes that build up in fixed steps. With ME/CFS, such training can even cause long-term and irreversible harm.
In rehabilitation, too, many are told to go beyond their limits. People affected report this in a survey by three Swiss patient organisations (not representative). Almost half of the respondents with Long COVID said their health was worse after rehabilitation. With ME/CFS, it was almost two thirds.
People affected usually know their limits best. Comments like “Just move more” are often well meant, but they add pressure.

### What is pacing?
Pacing means carefully budgeting your energy. People affected plan ahead, choose what matters most, slow down and take breaks in good time. Last-minute cancellations can be part of it too.
This lowers the risk of setbacks, but does not prevent all of them. Pacing is not a cure and not a training plan. You help by offering to lend a hand and by respecting breaks.

### Why are some people affected registered with an assisted dying organisation?
In Switzerland, assisted suicide (often called assisted dying) is legal under certain conditions. Many people with Long COVID and ME/CFS have registered with an assisted dying organisation, among them the president of Long Covid Switzerland, Chantal Britt. She says: “Not because we want to die, but because the situation is no longer bearable for many of my fellow sufferers.”
The main reason is the lack of care. There are only a few doctors with experience of these illnesses, and specialised outpatient clinics have long waiting lists or have temporarily stopped accepting new patients. Many go for years without a diagnosis and without effective help. On top of that, there are years of procedures with insurers and the Swiss disability insurance (IV), a lack of recognition and financial insecurity. Chantal Britt says that today it is easier for people who are severely affected to get assisted dying than to get adequate care and support.
Registering is a personal decision. Treat it with respect, without blame and without panic. Above all, it shows how much support is missing and how severely the illnesses change the lived reality of those affected, often to the point where life is hardly bearable or worth living.

### Will it get better?
That can’t be predicted with certainty. For many people with Long COVID, symptoms improve over time. For others, they last a long time, sometimes for years. With ME/CFS, the illness often lasts a long time, even though some people recover.
So far, there is no cure. But symptoms can be partly relieved. Research is ongoing, but according to the Federal Office of Public Health (FOPH), there are still gaps in knowledge about the causes and treatment of Long COVID.

## Swiss patient organisations
- [Long Covid Schweiz](https://www.long-covid-info.ch)
- [ME/CFS Schweiz](https://www.mecfs.ch)
- [Schweizerische Gesellschaft für ME & CFS](https://www.sgme.ch)

People outside Switzerland should contact the patient organisation in their own country.

## Sources
- [WHO – Post COVID-19 condition (Long COVID)](https://www.who.int/news-room/fact-sheets/detail/post-covid-19-condition-(long-covid))
- [NICE NG188 – Long-term effects of COVID-19](https://www.nice.org.uk/guidance/ng188)
- [NICE NG206 – ME/CFS: diagnosis and management](https://www.nice.org.uk/guidance/ng206)
- [CDC – Long COVID](https://www.cdc.gov/long-covid/signs-symptoms/index.html)
- [CDC – ME/CFS](https://www.cdc.gov/me-cfs/about/index.html)
- [FOPH – Post-Covid-19-Erkrankung](https://www.bag.admin.ch/de/post-covid-19-erkrankung)

## Video transcripts

### Deutsch

Stell dir vor, ein Mensch, den du kennst, sieht völlig gesund aus. Aber schon ein kurzes Gespräch, Duschen oder Einkaufen kann ihn an seine Grenzen bringen. Für manche Menschen mit Long Covid ist das Alltag. Man sieht es ihnen oft nicht an. Dabei ist Long Covid eine körperliche Erkrankung, die mehrere Körpersysteme betreffen kann.
Fatigue ist nicht einfach Müdigkeit, sondern eine starke, krankheitsbedingte Erschöpfung. Schlaf und Pausen laden den Akku oft nicht richtig auf. Konzentrieren kann sehr erschöpfen, manche reagieren empfindlich auf Licht und Lärm. Jeder Verlauf ist anders: Manche können Haus oder Bett kaum verlassen.
Am Samstag lacht Mira mit Freunden, am Sonntag geht nichts mehr. Bei manchen verschlechtern sich die Beschwerden schon nach kleiner Belastung, ob körperlich, geistig, emotional oder sozial. Oft erst Stunden oder Tage später. Das nennt man PEM, Post-Exertionelle Malaise. Das kann Tage, Wochen oder länger anhalten. PEM ist das Hauptmerkmal von ME/CFS. Das steht für Myalgische Enzephalomyelitis, auch Chronisches Fatigue-Syndrom genannt, eine schwere körperliche Erkrankung. ME/CFS kann nach Covid oder anderen Infekten entstehen, aber nicht alle mit Long Covid haben es.
Sätze wie «Beweg dich doch mehr» oder «Gestern ging es doch auch» sind gut gemeint, können aber verletzen und Druck machen. Bei PEM kann Durchhalten oder mehr Bewegung den Zustand verschlechtern. Was Mira braucht, ist nicht mehr Druck, sondern Verständnis.
Viele Betroffene hören in Arztpraxen, bei Versicherungen und auf Ämtern, das sei nur Stress oder psychisch. Noch immer fehlt vielen Ärztinnen, Ärzten und Behörden das Wissen über diese Krankheiten. Das bekommen Betroffene deutlich zu spüren. Anträge können lange dauern und viel Kraft kosten. Wenn Mira möchte, begleite sie zu Terminen. Hilf beim Symptomtagebuch, übernimm Formulare, Briefe und Anrufe.
Du kannst mehr helfen, als du vielleicht denkst. Glaube ihr, wenn sie sagt, dass ihre Energie nicht reicht. Akzeptiere kurzfristige Absagen. Mira teilt ihre schwankende Energie ein, um Rückschläge möglichst zu vermeiden. Das nennt man Pacing: keine Heilung, kein Trainingsplan. Biete an, Einkaufen oder Kochen zu übernehmen. Respektiere Pausen und persönliche Grenzen. Frag einfach: Was würde dir heute helfen?
Wenn Arbeiten möglich ist, nehmen flexible Zeiten, Pausen, Homeoffice oder ein kleineres Pensum Druck weg.
Menschen mit Long Covid und ME/CFS brauchen Menschen, die ihnen glauben. Die ihre Grenzen respektieren. Und die auch dann an ihrer Seite bleiben, wenn vieles nicht mehr so funktioniert wie früher.

### Français

Imagine quelqu'un que tu connais, qui a l'air en pleine santé. Mais même une courte discussion, une douche ou les courses peuvent l'amener à ses limites. Pour certaines personnes atteintes de Covid long, c'est le quotidien. Souvent, ça ne se voit pas. Pourtant, le Covid long est une maladie physique, qui peut toucher plusieurs systèmes du corps.
La fatigue du Covid long n'est pas une simple fatigue, mais un fort épuisement. Le sommeil et le repos rechargent souvent mal la batterie. Se concentrer peut vraiment épuiser, et certains sont sensibles à la lumière et au bruit. Chaque parcours est différent : certains peuvent à peine quitter la maison ou le lit.
Samedi, Mira rit avec des amis, dimanche, plus rien ne va. Chez certains, les symptômes s'aggravent déjà après un petit effort, qu'il soit physique, mental, émotionnel ou social. Souvent, des heures ou des jours plus tard. On appelle ça le malaise post-effort, ou MPE. Ça peut durer des jours, des semaines ou plus longtemps. Le MPE est le symptôme principal de l'EM/SFC. C'est l'encéphalomyélite myalgique, aussi appelée syndrome de fatigue chronique, une maladie physique grave. L'EM/SFC peut survenir après un Covid ou d'autres infections, mais pas chez toutes les personnes avec un Covid long.
Dire « Bouge un peu plus » ou « Mais hier, ça allait », ça part d'un bon sentiment, mais ça peut blesser et mettre la pression. Avec le MPE, se forcer ou bouger davantage peut aggraver son état. Mira n'a pas besoin de plus de pression, mais de compréhension.
Chez le médecin, à l'assurance ou à l'administration, on dit à bien des malades que c'est juste du stress, ou psychique. Aujourd'hui encore, beaucoup de médecins et d'autorités connaissent mal ces maladies. Les malades en font les frais. Les démarches peuvent être longues et épuisantes. Si Mira le souhaite, accompagne-la aux rendez-vous. Aide-la à tenir son journal des symptômes, occupe-toi des papiers et des appels.
Tu peux aider plus que tu ne le penses. Crois-la quand elle dit que son énergie ne suffit pas. Accepte les annulations de dernière minute. Mira répartit son énergie fluctuante pour éviter au mieux les rechutes. On appelle ça le pacing : ni un remède, ni un plan d'entraînement. Propose de t'occuper des courses ou de la cuisine. Respecte ses pauses et ses limites. Demande simplement : Qu'est-ce qui t'aiderait aujourd'hui ?
Si on peut travailler, des horaires souples, des pauses, le télétravail ou un taux réduit allègent la pression.
Les personnes avec un Covid long ou l'EM/SFC ont besoin de gens qui les croient. Qui respectent leurs limites. Et qui restent à leurs côtés, même quand bien des choses ne marchent plus comme avant.

### Italiano

Immagina una persona che conosci: sembra in perfetta salute. Ma anche una breve conversazione, una doccia o la spesa possono portarla al limite delle forze. Per alcune persone con Long Covid questa è la quotidianità. Spesso da fuori non si vede. Eppure il Long Covid è una malattia fisica, che può colpire diversi sistemi del corpo.
La fatigue non è solo stanchezza, ma una spossatezza intensa, dovuta alla malattia. Sonno e pause spesso non ricaricano davvero la batteria. Concentrarsi può sfinire, e alcune persone sono sensibili alla luce e ai rumori. Ogni decorso è diverso: c’è chi riesce a malapena a uscire di casa o dal letto.
Sabato Mira ride con gli amici, domenica non riesce più a fare nulla. In alcune persone i sintomi peggiorano già dopo un piccolo sforzo, che sia fisico, mentale, emotivo o sociale. Spesso solo dopo ore o giorni. Si chiama PEM, malessere post-sforzo. Può durare giorni, settimane o anche più a lungo. Il PEM è la caratteristica principale della ME/CFS. La sigla sta per encefalomielite mialgica, detta anche sindrome da fatica cronica, una grave malattia fisica. La ME/CFS può insorgere dopo il Covid o altre infezioni, ma non tutte le persone con Long Covid ne soffrono.
Frasi come «Muoviti di più» o «Ieri ce l’hai fatta» sono dette a fin di bene, ma possono ferire e fare pressione. Con il PEM, tenere duro o muoversi di più può peggiorare lo stato di salute. Mira non ha bisogno di altra pressione, ma di comprensione.
Molte persone colpite si sentono dire, dal medico, dalle assicurazioni e negli uffici, che è solo stress o psicologico. Ancora oggi molti medici e autorità sanno poco di queste malattie. E chi ne soffre lo prova sulla propria pelle. Le pratiche possono durare a lungo e costare molta energia. Se Mira vuole, accompagnala agli appuntamenti. Aiutala con il diario dei sintomi, occupati tu di moduli, lettere e telefonate.
Puoi aiutare più di quanto forse pensi. Credile quando dice che la sua energia non basta. Accetta le disdette all’ultimo momento. Mira dosa la sua energia altalenante, per evitare il più possibile le ricadute. Si chiama pacing: non è una cura, né un programma di allenamento. Offriti di fare la spesa o di cucinare. Rispetta le pause e i limiti personali. Basta chiedere: cosa ti aiuterebbe oggi?
Se lavorare è possibile, orari flessibili, pause, telelavoro o meno ore tolgono pressione.
Le persone con Long Covid o ME/CFS hanno bisogno di persone che credano loro. Che rispettino i loro limiti. E che restino al loro fianco, anche quando molte cose non funzionano più come prima.

### English

Imagine someone you know looks perfectly healthy. But even a short conversation, a shower, or grocery shopping can push them to their limits. For some people with Long COVID, this is everyday life. You often can’t tell by looking at them. Yet Long COVID is a physical illness that can affect several body systems.
Fatigue is not ordinary tiredness, but severe exhaustion caused by the illness. Sleep and rest often don’t properly recharge the battery. Concentrating can be very draining, and some people are sensitive to light and noise. Every case is different. Some people can barely leave the house or get out of bed.
On Saturday, Mira laughs with friends, but on Sunday she can’t do anything. For some people, symptoms get worse after even minor exertion, whether physical, mental, emotional, or social. Often not until hours or days later. This is called PEM, post-exertional malaise. It can last days, weeks, or longer. PEM is the hallmark of ME/CFS. That stands for myalgic encephalomyelitis, also known as chronic fatigue syndrome, a serious physical illness. ME/CFS can develop after COVID or other infections, but not everyone with Long COVID has it.
Comments like “Just move more” or “You were fine yesterday” are well meant, but they can hurt and add pressure. With PEM, pushing through or moving more can worsen the condition. What Mira needs isn’t more pressure, but understanding.
Many of those affected are told by doctors, insurers, and officials that it’s just stress or psychological. Many doctors and authorities still lack knowledge of these illnesses. And those affected really feel it. Applications can take a long time and drain a lot of energy. If Mira wants, go with her to appointments. Help with her symptom diary and handle forms, letters, and calls.
You can help more than you might think. Believe her when she says she doesn’t have enough energy. Accept last-minute cancellations. Mira budgets her fluctuating energy to avoid setbacks where possible. This is called pacing: not a cure, not a training plan. Offer to do the shopping or cooking. Respect breaks and personal limits. Just ask: What would help you today?
If work is possible, flexible hours, breaks, working from home, or a lighter workload can ease the pressure.
People with Long COVID or ME/CFS need people who believe them. Who respect their limits. And who stay by their side, even when many things no longer work the way they used to.

### Español

Imagina a una persona de tu entorno que parece totalmente sana. Pero hasta una charla corta, ducharse o hacer la compra puede llevarla al límite. Para algunas personas con COVID persistente, esto es el día a día. A menudo no se les nota. Sin embargo, la COVID persistente es una enfermedad física, que puede afectar a varios sistemas del cuerpo.
La fatiga no es solo cansancio, sino un agotamiento intenso causado por la enfermedad. El sueño y el descanso a menudo no recargan del todo la batería. Concentrarse puede agotar mucho; algunas personas son sensibles a la luz y al ruido. Cada caso es distinto: hay quien apenas puede salir de casa o de la cama.
El sábado Mira se ríe con amigos; el domingo ya no puede más. En algunas personas, los síntomas empeoran incluso tras un pequeño esfuerzo, ya sea físico, mental, emocional o social. A menudo, con horas o días de retraso. Esto se llama MPE, malestar post-esfuerzo. Puede durar días, semanas o más. El MPE es el síntoma principal de la EM/SFC. Son las siglas de encefalomielitis miálgica, también llamada síndrome de fatiga crónica, una enfermedad física grave. La EM/SFC puede aparecer tras la COVID u otras infecciones, pero no todas las personas con COVID persistente la tienen.
Frases como «Tienes que moverte más» o «Ayer sí pudiste» se dicen con buena intención, pero pueden herir y meter presión. Cuando hay MPE, forzarse o moverse más puede empeorar el estado de salud. Lo que Mira necesita no es más presión, sino comprensión.
Muchas personas afectadas oyen en consultas, aseguradoras y organismos públicos que es solo estrés o algo psicológico. Todavía muchos médicos, médicas y autoridades saben poco de estas enfermedades. Y las personas afectadas lo sufren de lleno. Los trámites pueden alargarse y costar mucha energía. Si Mira quiere, acompáñala a sus citas. Ayúdala con el diario de síntomas, encárgate de formularios, cartas y llamadas.
Puedes ayudar más de lo que crees. Créela cuando dice que no tiene energía suficiente. Acepta que cancele a última hora. Mira dosifica su energía cambiante para evitar recaídas en lo posible. Esto se llama pacing: no es una cura ni un plan de entrenamiento. Ofrécete a hacer la compra o a cocinar. Respeta sus pausas y sus límites. Solo pregúntale: ¿Qué te ayudaría hoy?
Si se puede trabajar, el horario flexible, las pausas, el teletrabajo o una jornada reducida quitan presión.
Las personas con COVID persistente o EM/SFC necesitan personas que las crean. Que respeten sus límites. Y que sigan a su lado, incluso cuando muchas cosas ya no funcionan como antes.