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Long COVID and ME/CFS

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Long COVID is a long-lasting illness after COVID-19; ME/CFS is a serious long-term illness with severe tiredness that gets worse after activity.

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What is Long COVID?

Long COVID is a chronic condition that follows infection with the virus that causes COVID-19 and lasts at least three months. Anyone who has had COVID-19 can get it, including children, after a mild or a severe illness. It is more common after severe illness and in people who were not vaccinated. Symptoms can come and go, get better or worse, and sometimes cause disability.

What are the signs of Long COVID?

Long COVID can affect many parts of the body. Symptoms include:

  • tiredness and fever;
  • shortness of breath and cough;
  • chest pain or a pounding heart;
  • ‘brain fog’, headaches and sleep problems;
  • stomach pain, diarrhoea or constipation.

What is ME/CFS?

ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a serious, often long-lasting illness that affects many systems of the body. People have severe tiredness that rest does not relieve, along with problems with thinking and sleep, dizziness and pain. A key feature is that symptoms get worse after physical or mental effort (post-exertional malaise). People with ME/CFS may not look ill. Some people with Long COVID have symptoms similar to ME/CFS.

How are they treated today?

No lab test confirms either condition. Doctors diagnose them from your history and an examination; in Long COVID, routine tests are often normal. There are no approved treatments for Long COVID, and there is no cure or approved treatment for ME/CFS. You and your doctor can make a personal plan to manage symptoms and improve quality of life. With ME/CFS, learning to pace your activity can help. Most people with Long COVID slowly improve, though some have symptoms for much longer.

Machine summary of published research · sources and dates below · 2026-11-06

Written from: CDC: Long COVID Basics (2026-05-06) · MedlinePlus: Long COVID (2026-10-28) · CDC: ME/CFS Basics (2024-05-10) · read on 2026-11-06

Cure
No cure yetSource: NICE
Standard treatment
No proven drug; symptom care and rehabilitationSource: NICE

Cure status

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Here you will find questions you can ask, help with difficult talks, organisations for carers and your relative's rights.

Questions for your relative's doctor

How do I talk to them about this?

You do not need the right words. Ask what your relative wants to know, and let them set the pace. These pages can help.

Support for you as a carer

Looking after someone is work too. These organisations help carers, and the list further down this page shows helplines by country.

Organisations on this page

Power of attorney and patient rights, by country

A doctor can share information and a relative can act only with the patient's consent or a legal authority. It is easier to arrange this early.

If you are looking for your child

Children are often treated differently from adults, in specialist centres. Here is where to start.

Before you pay

Parents often receive offers of paid treatment. Please go through this list before you pay for anything.

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For patient organisations

You can share or print these pages for your members. They are free and need no account.

Apply for experimental treatment or a research study

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If the treatment is not working

If the treatment has stopped working, or you were told there are no more options, here is what you can ask and where you can look next.

Do not stop or put off treatment without talking to your doctor.

Questions for this situation

Trials for people who have already been treated

Many trials look specifically for people who have already had treatment. Registries mark these with words like "previously treated", "refractory" or "relapsed". The trial team decides who can take part.

What a phase 1 trial is for

A phase 1 trial mainly tests whether a new medicine is safe and which dose can be given. It is not built to show that the medicine works.

Compassionate use

Some medicines not yet approved can be given outside a trial when there is no other option. This does not exist for every medicine or in every country. Your doctor makes the request, and the authority or the manufacturer decides.

A second opinion

Asking for a second opinion is normal and does not mean you distrust your doctor. Take your results and a list of your treatments with you. For rare diseases, your doctor can also ask a European Reference Network.

Palliative care

This is care for symptoms and quality of life, and you can have it alongside other treatment. It does not mean anyone has given up on you.

Before you pay

In this situation many people receive offers of paid treatment. Go through this list before you pay for anything.

Open the before-you-pay list

If this feels too heavy right now

You can talk to someone. In Hungary and in the UK, 116 123 is a free line for emotional support, day and night. The list on this page shows helplines in other countries.

Not medical advice. Talk to your care team before you change anything in your treatment.

Organisations that can help

Helplines, patient groups and support services for you and your family.

Select your country to see the organisations there, starting with the ones closest to you.

Umbrella organisations (they connect national groups)

  • European Federation of Neurological Associations (EFNA)

    Umbrella of 21 pan-European neurology patient groups; map of European neurology patient organisations.

    Europe

    Visit site: European Federation of Neurological Associations (EFNA)
  • European ME Alliance (EMEA)

    Grouping of national ME organisations in about 20 countries: ME guidelines, fact sheets, country member pages; leads patient involvement in the EU DISCOVER-ME project.

    Europe

    Visit site: European ME Alliance (EMEA)
  • European ME Coalition

    Patient- and carer-led European ME/CFS advocacy for biomedical research funding (EU Parliament petition and resolution).

    Europe

    Visit site: European ME Coalition
  • Long COVID Europe

    Patient-run European network of Long COVID associations: shares information and contacts, pushes for recognition, patient-focused research and rehabilitation; WHO/Europe collaborating partner.

    Europe

    Visit site: Long COVID Europe
  • World ME Alliance

    Global alliance of national ME/CFS organisations (formerly IAfME): coordinated policy dialogue, shared advocacy resources; also covers post-COVID conditions.

    International

    Visit site: World ME Alliance

General support

For anyone who is ill, whatever the disease: patients' rights and legal aid, crisis lines, hospice and palliative care, care in another EU country, and patient organisations' umbrella bodies.

International

Frontlight is not affiliated with these organisations; we list them because they help.

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Groups with active Long COVID and ME/CFS work.

Harvard University

Cambridge, United States

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Stanford University

Stanford, United States

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University of California, San Francisco

San Francisco, United States

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University of Washington

Seattle, United States

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Johns Hopkins University

Baltimore, United States

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University of Oxford

Oxford, United Kingdom

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Stanford Medicine

Stanford, United States

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Brigham and Women's Hospital

Boston, United States

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University College London

London, United Kingdom

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Icahn School of Medicine at Mount Sinai

New York, United States

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Massachusetts General Hospital

Boston, United States

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