Chronic fatigue syndrome (Myalgic encephalomyeli)

Myalgic encephalomyelitis (ME) is also known as chronic fatigue syndrome (CFS). It is a chronic and complex illness that causes extreme fatigue and abnormal exhaustion. It is a condition that affects many parts of the body including the brain, muscles, digestive, immune and cardiac systems. ME/CFS is a severe, acquired illness and is classified as a neurological disorder.

The term myalgic encephalomyelitis means pain in the muscles, and inflammation in the brain and spinal cord. Scientists are starting to understand some of the biological changes in the bodies of people with ME/CFS, although they have not yet found how to prevent, or cure it.

It is estimated that up to 250,000 people in Australia live with this syndrome with 75-80% of them being female.

ME/CFS symptoms

The main ME/CFS symptom is called post-exertional malaise (PEM). This means that symptoms increase or get worse after minimal physical or mental activity that would not have normally caused problems before the illness.

The effects of activity may be delayed for as much as 24 to 48 hours which can make it hard for people to know how much activity is too much. The extent of PEM can vary from person to person and can depend upon the severity of the condition. It can last for 24 hours or a few days. In some cases, a serious relapse can last for weeks or months. About 25% of people with ME/CFS have symptoms so severe they are unable to leave the house or their bed.  

Other symptoms can include: 

  • cognitive problems such as thinking, poor concentration or loss of memory

  • disrupted sleep

  • headaches, light-headedness or dizziness

  • muscle and joint aches and pains

  • sore throat, tender lymph nodes and feeling like you have the flu

  • gastrointestinal issues such as nausea, constipation or diarrhoea

  • blood pressure changes or heart palpitations

  • shortness of breath with exertion or when standing

  • sensitivities to light, noise, food, medication or chemicals

  • inability to cope with temperature changes.

Some people experience a sudden onset of the condition, while other people notice it develops gradually over months or years.

What causes ME/CFS?

The exact cause of ME/CFS is unknown. However, the condition often develops after an acute infection such as the flu, upper respiratory infection, or glandular fever. It may also be triggered by exposure to pesticides, heavy metals and pollution.6

Other contributing factors may include:2

  • physical trauma such as surgery or an accident

  • physical, mental or emotional stress genetics.

Diagnosing chronic fatigue syndrome

There is no test to diagnose ME/CFS, but your doctor may order tests to rule out any other conditions that could be causing your condition. For an official diagnosis to be made, you must have the following three symptoms:

  • substantial reduction in functioning and extreme fatigue for at least six months that is not related to significant exertion or alleviated with rest

  • post-exertional malaise

  • sleep that doesn’t refresh.

You must also have at least one of these symptoms:

  • impaired cognitive ability (e.g. memory, concentrating, understanding)

  • palpitations, sweating, dizziness or nausea when standing that is relieved when lying down.

Treating and Managing ME/CFS

Most people with ME/CFS may never recover from it, with less than 10% of people recovering to the level of function they had pre-illness.

Treatment of ME/CFS involves managing symptoms and improving quality of life. Currently, there are two main arms of treatment:

  1. Pacing and rest – This is learning how much activity you can do without triggering symptoms. It often involves breaking down activity into short bursts interspersed with rest periods, so you have energy left at the end of the day.

  2. Stepwise symptom management – This involves developing ways to reduce your symptoms, starting with the ones that impact you the most.

Working with a multidisciplinary team that includes an occupational therapist, physiotherapist and psychologist can also help you manage this condition.

What else can you do?

Other strategies you can do to help manage ME/CFS include:

  • keeping a diary detailing activities and how they impact you

  • making time to relax

  • limit daytime napping and ensure going to bed at the same time each night

  • avoiding caffeine, nicotine, alcohol and other drugs that may interfere with your sleep.

Some people also find that joining a support group and meeting other people with the illness can be helpful.

When to see your doctor?

If ongoing fatigue that isn’t improved with rest is a problem for you, visit your doctor. There could be many reasons why you’re experiencing these symptoms. ME/CFS is just one of them.

Your local MediADVICE pharmacist is available to help you manage your health. We can provide expert advice and recommend products that may help provide relief when you’re not well. We can also refer you to a doctor if necessary.

Visit your nearest pharmacy today

Disclaimer
General advice only – this information should not replace the information provided to you by your health care professional. If symptoms are severe or persist, please speak to your health care professional. Information current as of date of publishing.
Sources:
1ME/CFS Australia, A national perspective for Myalgic Encephalomyelitis,https://mecfs.org.au/
2Emerge Australia, What is ME/CFS?,https://www.emerge.org.au/what-is-me-cfs/#
3Hanson MR. The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome.PLoS Pathog.2023;19(8):e1011523. Published 2023 Aug 17. doi:10.1371/journal.ppat.1011523
4Better Health Channel, Chronic fatigue syndrome,https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs
5Healthdirect, Chronic fatigue syndrome (Myalgic Encephalomyelitis),https://www.healthdirect.gov.au/chronic-fatigue-syndrome-cfs-me
6ME/CFS Australia, Causes,https://mecfs.org.au/about-mecfs/causes/