Are you feeling tired and exhausted all the time? Do you feel restless after only minimal physical activity? You may have myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS).
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex illness. People diagnosed with ME/CFS are often unable to do their usual activities. There are times they will be unable to get out of bed. People with ME/CFS have overwhelming fatigue that is not improved by rest. It may also worsen after any activity, whether physical or mental.
CFS is a severely debilitating illness of at least six months’ duration that often starts suddenly but can start more gradually, characterized by fatigue and many other symptoms. For many people, ME/CFS can be a lifelong condition. Full recovery or a return to pre-illness functioning is more common in those who are young and healthy before they develop ME/CFS.
Symptoms of ME / CFS?
Definitions of severity are unclear because individual symptoms vary widely in severity, and people may have some symptoms more severe than others.
Symptoms of chronic fatigue syndrome can vary from person to person, and the severity of symptoms can fluctuate from day to day. Signs and symptoms may include:
- Fatigue and / or sleepiness that has been present for at least 6 months for which no other cause has been found
- Problems with memory or concentration
- Sore throat
- Enlarged lymph nodes in your neck or armpits
- Unexplained muscle or joint pain
- Dizziness that worsens with movement from lying down or sitting to standing
- Un-refreshing sleep
- Extreme exhaustion after physical or mental exercise
How common is ME / CFS?
ME/CFS is quite common. Research shows that 0.2 to 0.7% of people have ME/CFS. In Australia alone, this means there are likely to be between 50,000 and 172,000 people are suffering from this condition.
The US National Academy of Sciences has estimated that there are between 836,000 and 2.5 million people in the United States with ME/CFS.
How does ME / CFS develop?
Anyone can get ME/CFS. While it most commonly develops in younger adults or adolescents it can occur at any age. Among adults, women are affected more often than men. Whites are diagnosed more than other races and ethnicities, but many people with ME/CFS have not been diagnosed, especially among minorities.
The cause of ME/CFS is unknown, but several factors may be involved. Some people experience a sudden onset of ME/CFS while others experience a gradual onset over months or years. These differences are not yet understood.
Often there’s a trigger, or a precipitating factor. This can be an infection, such as glandular fever or other bacterial or viral infections. Around 11% of people who get glandular fever develop a fatigue syndrome. A significant number of people can have fatigue after infection with COVID-19. Whilst long-COVID shares many symptoms with ME/CFS it has some additional features such as respiratory and cardiac complications. Other triggers that have been described are physical stresses such as surgery or emotional stress such as a traumatic event. ME/CFS can also be triggered after a prolonged period of being overly busy. In these cases symptoms can be similar to burnout, but have the added physical features of post exertional fatigue or malaise.
What are the principles of treatment?
It’s tricky to talk about treatments because we don’t know the actual cause of chronic fatigue syndrome. The word treatment is not something that we tend to use; instead, we tend to talk about management strategies. When talking about management strategies, we look to increase people’s quality of life. For others, that means getting back to normal life and moving forward. And for some, it’s about managing their illness better so it impacts less on their day-to-day life and they can still engage in activities they enjoy.
People with ME/CFS need a timely and accurate diagnosis so they get appropriate care for their symptoms. It is also important to monitor and review regularly, particularly when their symptoms worsen, change, or become severe.
The UK National Institute for Health and Care Excellence (NICE) have recently published extensive guidelines on the diagnosis and management of ME/CFS. An important change to previous recommendations is the removal of graded exercise and cognitive behaviour therapy. Exercise is an important part of management, but it needs to be tailored to each individual with a focus on avoiding deconditioning rather than seeing exercise training as a way of curing ME/CFS.
If I think I may have ME/CFS, what should I do?
Fatigue can be a symptom of many illnesses, such as infections or psychological disorders. In general, see your doctor or any healthcare provider if you have persistent or excessive fatigue. They may refer you to a specialist in ME/CFS to help.
Once a diagnosis is made, it is important to build your team to manage the range of symptoms that occur with ME/CFS. Exactly who is on that team will depend on your symptoms but could include:
- Cardiologist – if orthostatic intolerance such as POTS
- Sleep physician – if significant sleepiness or sleep disturbance
- Pain specialist – if significant pain
- Exercise physiologist – to prevent becoming deconditioned and work on principles of pacing
Related links and posts:
- NICE guidelines on the diagnosis and management of ME/CFS
- Podcast episode on ME/CFS
- Exercise physiologists with experience managing ME/CFS
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