Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a long name for a complex disease with many severe and disabling symptoms. ME/CFS impacts many parts of the body and can make you extremely unwell[1,2]. Some people with long COVID experience similar symptoms to people with ME/CFS, you can learn more about long COVID by clicking here[3].
What does this long name mean?
Myalgic encephalomyelitis (ME) is a medical name, and when it is broken down, it means:
- Myalgic means muscle pain
- Encephalo refers to the brain
- Mye means spinal cord
- –itis means inflammation.
To understand more about Emerge Australia’s position on using the name ME/CFS, click here.
ME/CFS impacts many parts of your body, including but not limited to:
- Brain
- Muscles
- Stomach and digestion
- Immune system (the part that fights sickness)
- Circulatory system (blood circulation)[4].
Symptoms of ME/CFS
Post-exertional malaise (PEM) is a severe, disabling symptom and the key feature of ME/CFS. Approximately half of the people living with long COVID also experience PEM. Understanding PEM is important because it affects how ME/CFS and long COVID are managed and explains why you can become very unwell after small amounts of activity.
PEM is a delayed worsening of multiple symptoms after physical or mental activity that, before illness, would not have caused any issues. PEM is not the same as fatigue. Fatigue is a common symptom in many conditions and often improves with gradual, consistent activity.
In ME/CFS, increasing activity outside of your indevidual limitations can cause symptoms to worsen. This is what makes PEM different and crucial to recognise. Click here to learm mote about PEM.
ME/CFS has many other common symptoms, including but not limited to:
- Trouble sleeping or not feeling rested after sleep
- Pain in muscles, joints, or the head
- Difficulty thinking, focusing, or remembering
- Trouble with noise or bright light
- Feeling dizzy or worse when sitting or standing
- Feeling sick or having stomach pain [4].
To look at a list of common ME/CFS symptoms, click here.
How is long COVID like ME/CFS?
About half of the people who don’t recover from COVID meet the diagnostic criteria for ME/CFS. Many people with long COVID experience similar symptoms to people with ME/CFS, while some symptoms are different [3,5]. To understand more about the links between viral illnesses such as long COVID and ME/CFS, click here.
What can cause ME/CFS?
Doctors and scientist do not know what causes ME/CFS, however ME/CFS can develop after:
- A virus or infection (like the flu or glandular fever)
- Contact with harmful chemicals
- A significant injury or accident
- An operation (surgery)
- Stress or emotional trauma[4]
Or,
- ME/CFS can develop slowly, over time, with no clear trigger.
While scientists do not yet know the exact cause of ME/CFS, they have found many changes in the bodies of people with ME/CFS that show that it is a biological condition.
Jennifer has lived with ME/CFS since age thirteen years. She shares a snapshot of what it’s like to be a mother with this illness and the devastating losses it brings. She hopes that long COVID research will help both conditions.
An Existence Project is a short stop-motion animation about what it is like to live with mild or moderate ME/CFS. It was created by Inga Topolnicki using handmade watercolour paper props.
How do doctors diagnose ME/CFS?
There is no single test. Medical doctors such as general practitioners, assess you carefully to make sure there is no other reason for your symptoms.
Emerge Australia recommends the US National Academy of Medicine (NAM) criteria for diagnosing ME/CFS. To learn more about Emerge Australia’s position on different diagnostic criteria’s click here.
You must experience the following symptoms for more than six months to be diagnosed with ME/CFS:
- Fatigue: feeling very tired all the time
- Post-exertional malaise (PEM): feeling much worse after doing even tiny amounts of activity
- Unrefreshing sleep: waking up feeling tired.
Plus either:
- 1. Cognitive issues: Problems thinking or remembering things
or
- 2. Orthostatic intolerance: when standing or sitting[6].
To learn more about diagnosis of ME/CFS and the US National Academy of Medicine (NAM) criteria click here.
How is ME/CFS managed?
There are no proven treatments for ME/CFS. However, you can regain some control over your life by:
- Learning about and understanding PEM
- Learning how to look after your energy to avoid PEM, as much as possible
- Managing your individual symptoms
- Managing associated conditions if you have them such as; mast cell activation (MCAS), fibromyalgia, hypermobile ehlers-danlos syndrome (hEDS) and orthostatic intolerance (OI) and postural orthostatic tachycardia syndrome (POTS).
While there are no proven treatments for ME/CFS, common associated conditions, like ortostatic intolerance, do have treatment options. People often report improved quality of life when these conditions are managed properly. To learn more about associated conditions, click here.
How severe is ME/CFS?
ME/CFS affects some people more than others. You maybe able to still work or go to school, while others can be too sick to get out of bed or leave the house2. Anyone, young or old, from any cultural background can have ME/CFS[4].
ME/CFS may also be grouped according to the level of disability caused by ME/CFS. These levels are a guide to how symptoms affect day-to-day functioning. However, each person has their own unique symptom and severity profile. Emerge Australia also notes that even “mild” ME/CFS can have a significant impact on a person’s life.
Disability levels are commonly categorised as follows, although they are not limited to these groups:
- Mild: 50% reduction in pre-illness activity
- Moderate: mostly housebound
- Severe: mostly bedridden
- Very severe: totally bedridden and needs help with basic functions.
People with ME/CFS may begin with one level of disability, then move to another. For some people, symptoms can worsen significantly with no known cause. Some people have a “fluctuating illness” where they have better and worse times. It is unclear why this occurs.
How long does ME/CFS last?
A small number of people recover but recovery is often slow. Some people improve, others stay the same, and about 20% get worse over time [5,6] . You can read more about Emerge Australia’s recovery position by clicking here.
Is ME/CFS and long COVID contagious?
Even though some people become sick with ME/CFS or long COVID after a virus, neither is contagious.
What other important facts should I know about ME/CFS?
There are many important facts about what it’s like to live with ME/CFS and how to manage your symptoms. There are also many misconceptions about ME/CFS that cause stigma and harm to those who live with the condition.
- To help break down the stigma, click here to learn more about important myths and facts.
- To explore more about the research being done on ME/CFS and long COVID, you can visit Emerge Australia’s Research Digest here.
You can also access the links mentioned on this page by clicking on the following:
Free online education portal
Self-paced education modules are designed to help you understand the basics of ME/CFS, post-exertional malaise (PEM), energy management and pacing.
State of the nation
This document is a great read for people who want to learn more about the issues and Emerge Australia’s priority areas.
Imagine podcast
Emerge Australia’s Imagine Podcast series provides conversations with patients, carers, practitioners, academics and leaders immersed in the challenges of ME/CFS and long COVID.
Reference
- Lorusso, L. et al. Immunological aspects of chronic fatigue syndrome. Autoimmun Rev 8, (2009).
- Carruthers, B. M. et al. Myalgic encephalomyelitis: International Consensus Criteria. Journal of Internal Medicine vol. 270 Preprint at https://doi.org/10.1111/j.1365-2796.2011.02428.x (2011).
- Office for National Statistics. Technical article : Updated estimates of the prevalence of post-acute symptoms among people with coronavirus ( COVID-19 ) in the UK : 26 April 2020 to 1 August 2021. Office for National Statistics (2021).
- National Institute for Health and Care Excellence. Myalgic Encephalomyelitis (or Encephalopathy)/ Chronic Fatigue Syndrome : Diagnosis and Management. NICE Guidelines (2021).
- Garapaty, N., Reyes, K., Tehrani, L., Barbosa Mendoza, M. & Hardigan, P. Assessing the Relationship in Symptomology of Myalgic Encephalitis/Chronic Fatigue Syndrome and Long COVID. Am J Med Open https://pubmed.ncbi.nlm.nih.gov/40271015/ (2025).
- Institute of Medicine (IOM). Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Beyond Myalgic Encephalomyelitis/Chronic