Long COVID and ME/CFS

What is it?

Long COVID (also called post-COVID syndrome) is when the symptoms of COVID-19 go on for longer than 12 weeks.² Anyone who has had COVID-19, mild or severe, can get it.¹ It is more likely after a severe illness, in women, in people with other health problems, and in people who were not vaccinated.¹

ME/CFS (myalgic encephalomyelitis or chronic fatigue syndrome) is a long-term condition that can affect many parts of the body.³ Its cause is not known, and it can affect anyone, including children.³ Some people with long COVID have symptoms like those of ME/CFS.¹

The first signs

The signs of long COVID differ from person to person.²

• extreme tiredness (fatigue);²
• shortness of breath;²
• aching joints and muscles;²
• trouble with memory and concentration ("brain fog").²

They can get better, come and go, or new ones can appear; stress or more activity can make them worse.² In ME/CFS the main signs are tiredness that rest and sleep do not fix, poor sleep, brain fog, and symptoms that get worse after physical or mental effort, sometimes hours or days later.⁴

How doctors find out

There is no single test for either condition.^1,5 For long COVID, your family doctor asks about your symptoms and how long you have had them, and may check your blood pressure, heart rate and blood oxygen, do blood tests, or arrange a heart tracing (ECG) or an X-ray.² Test results may be normal, so it can take some time to get a diagnosis.¹ A symptom diary can help you see what makes your symptoms better or worse.²

For ME/CFS, the doctor asks about your health and examines you, and may do blood or urine tests to rule out other causes, such as a low blood count or a slow thyroid.⁵ Doctors think of ME/CFS when severe tiredness, sleep problems, trouble thinking, and worsening after effort all come together and nothing else explains them.⁵

Current treatment

No specific treatment; care plan to ease symptomsSource: MedlinePlus

Will it get worse?

It is different for everyone.^2,1 Most people with long COVID slowly get better, but for some the symptoms last for months or years and affect daily life, work and relationships.^1,2 Most people with ME/CFS are mildly or moderately affected, but about 1 in 4 have severe symptoms and may be housebound or in bed most of the time.⁴ In both, symptoms can come and go, and can get worse at times.^3,2

Medicines: what helps, and what to watch for

There is no specific medicine for ME/CFS and no specific treatment for long COVID, but painkillers can ease some symptoms.^1,6,2 Ordinary painkillers can help with headaches and muscle or joint pain.⁶ For ME/CFS, a family doctor may give stronger painkillers for a short time, or a low dose of an antidepressant such as amitriptyline for pain or poor sleep.⁶

Good to know:

• if pain goes on for a long time, you may be sent to a pain clinic;⁶
• for ME/CFS there is not enough evidence for supplements such as vitamin B12, vitamin C, magnesium or coenzyme Q10, or for complementary medicine.⁶

Pacing and therapy help too

• energy management (pacing) teaches you to use your energy each day without making the symptoms worse, often with a diary or an app;⁶
• physiotherapy and exercises can help with breathing and muscle pain;²
• talking therapy (CBT) can help with anxiety, low mood and tiredness; in ME/CFS it helps you live with the condition but does not treat it;^2,6
• cognitive rehabilitation can help with memory and concentration;²

Is there a cure?

Not yet.^3,2 There is no cure for long COVID or for ME/CFS, but treatment can ease the symptoms.^3,2 Long COVID is still being researched.²

See the 196 trials you can join

Sources

Written in plain words by Frontlight from these pages:

1. MedlinePlus: Long COVID
2. NHS: Long-term effects of COVID-19 (long COVID)
3. NHS: Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) – Overview
4. NHS: ME/CFS – Symptoms
5. NHS: ME/CFS – Diagnosis
6. NHS: ME/CFS – Treatment