We all feel tired and worn out from time to time. But while most of us can fix this with a good night’s sleep or some ‘me time’, it can be more complicated for those with chronic fatigue syndrome (CFS).
CFS, also known as myalgic encephalomyelitis (ME), is a health condition that causes extreme tiredness. According to the ME Association, around 1.25 million people could be affected by ME/CFS in the UK.
Here, we’ll cover exactly what ME/CFS is, as well as its causes, symptoms, and ways to cope.
What is chronic fatigue syndrome?
Chronic fatigue syndrome, otherwise known as myalgic encephalomyelitis, is a long-term health condition that affects the nervous and immune systems.
While there are a number of potential symptoms, the most common one is extreme tiredness that doesn’t fully improve with rest. For many people, this can prevent them from carrying out daily tasks and have a significant impact on quality of life.
What are the symptoms of ME/CFS?
Symptoms of CFS can vary from person to person. However, according to the NHS, some of the most common include…
- Feeling extremely fatigued all the time – and finding it difficult to carry out daily activities as a result
- Still feeling tired after sleeping or resting
- Taking a long time to recover from physical activity or exercise
- Trouble sleeping – for example, waking up often during the night
- Problems with thinking, memory, and concentration
Some other, less common symptoms of ME/CFS include…
- Digestive problems such as loss of appetite, cramps, diarrhoea, constipation, excessive wind/bloating, indigestion, and irritable bowel syndrome.
- Dizziness with or without nausea
- Flu-like symptoms
- Headaches
- Muscle or joint pain
- Fast or irregular heartbeats
The severity of ME/CFS symptoms can vary significantly, and even change day to day. For example, people with mild ME/CFS may be able to carry out light domestic tasks, such as cooking – while in severe cases, people may need help with eating due to issues with chewing and swallowing.
However, according to research, with treatment and lifestyle changes, around 40% of people experience an improvement in ME/CFS symptoms over time.
What can cause ME/CFS and are there any risk factors for developing it?
It’s not currently known exactly what causes ME/CFS.
However, according to the NHS, there are a number of theories about what can trigger its onset or put you more at risk of developing it.
Some of the potential causes or triggers for ME/CFS include…
- Genetics – ME/CFS appears to be more common in some families
- Being female – research suggests that women are two to four times more likely to be diagnosed with MC/CFS than men
- Age – ME/CFS most commonly develops in people in their mid-20s to mid-40s
- Bacterial infections, such as pneumonia
- Hormone imbalances
- A weakened immune system
- Viral infections, such as glandular fever
How is ME/CFS diagnosed?
Because symptoms of ME/CFS can be similar to various other illnesses, it’s important to receive a proper diagnosis from your GP.
For example, ME/CFS is often misdiagnosed as depression. However, while research shows that ME/CFS can increase the risk of anxiety and depression due to its impact on daily life, it’s important to note that these are separate conditions.
There’s no specific test for diagnosing ME/CFS, but there are clear guidelines provided to help doctors diagnose the condition.
Your GP will ask you about your symptoms and medical history, and carry out a physical examination to help rule out other potential health conditions.
In some cases, they may also offer blood or urine tests. These can be particularly useful for ruling out other conditions like anaemia, kidney problems, or an underactive thyroid.
Because other conditions need to be ruled out first, it can sometimes take a while to diagnose ME/CFS. Though, many patients are offered advice about managing symptoms in the meantime.
You can find out more about how ME/CFS is diagnosed on the NHS website.
How can symptoms of ME/CFS be managed?
There’s currently no direct cure for ME/CFS but there are ways to manage and relieve symptoms. Methods used to do so will depend on how ME/CFS is affecting you. But early diagnosis, therapy, and medication may help.
We’ll cover some of the symptom management options for ME/CFS below.
Cognitive behavioural therapy (CBT)
Cognitive behavioural therapy (CBT) can sometimes be useful for mild or moderate cases of ME/CFS by helping people to explore self-management strategies.
Talking therapies like CBT are available on the NHS – or you can ask your GP to refer you.
However, it’s important to understand that while CBT may help with managing symptoms of CFS, it’s not curative.
For example, this research review from 2019 suggests that CBT as a treatment for ME/CFS only has a recovery rate of around 7%, which is the same as that of people who receive standard medical care.
The National Institute for Health and Care Excellence (NICE) guidelines for 2021 state, “The committee wanted to highlight that cognitive behavioural therapy (CBT) has sometimes been assumed to be a cure for ME/CFS. However, it should only be offered to support people who live with ME/CFS to manage their symptoms, improve their functioning and reduce the distress associated with having a chronic illness.”
Medicine
Certain medicines can sometimes be useful for relieving symptoms of ME/CFS. This includes over-the-counter painkillers to help ease headaches, and muscle and joint pain.
In more severe cases, your GP may prescribe stronger painkillers, but it’s recommended that these should only be taken for a short time. Antidepressants can also be prescribed for those with ME/CFS who are in pain and/or having trouble sleeping.
5 tips for living with ME/CFS
Alongside professional treatment, lifestyle changes can also help to manage ME/CFS symptoms.
We’ll explore some ideas below…
1. Eat a healthy, balanced diet
Eating a healthy, balanced diet and drinking plenty of fluids is important for managing ME/CFS symptoms and helping energy management.
While there’s no one-diet-fits-all approach, there are some general tips that can be useful. This includes staying hydrated, limiting caffeine and alcohol intake, getting enough vitamins and minerals, and prioritising low glycemic index carbohydrates to help avoid blood sugar spikes.
If you’re looking for more information on eating a healthy diet, why not check out the diet and nutrition section of our website?
2. Take steps to improve your sleep quality
ME/CFS is often accompanied by sleep problems that can make symptoms worse. For example, you might have trouble getting to sleep, need an excessive amount of sleep, or wake up feeling unrested.
For this reason, doing what you can to improve your sleep quality can help to improve ME/CFS symptoms. The sleep and fatigue section of our website has plenty of useful information, including everything from ways to improve insomnia to how to design the perfect bedroom for sleep.
If you’re advised to change your sleep pattern, it’s best to do this gradually and under the guidance of your GP. This is because spending too much time in bed can increase the risk of pressure sores and blood clots.
3. Consider whether workplace changes could help
Work can sometimes be a source of stress and anxiety for people with ME/CFS. For example, you might worry about how your symptoms will affect your focus and productivity.
As a result, if you’re well enough to work, it can be a good idea to speak to your employer about any changes that might help you work effectively. Your GP should also be able to advise you on any changes that can ease the transition.
4. Remember to take things at your own pace
ME/CFS can affect people in different ways, so it’s important to take things at your own pace.
Pacing, or keeping within your available energy, is a self-management strategy designed to help people with MC/CFS avoid overdoing exercise or other activities.
This can involve learning to stop activities before they impact your energy reserves and keeping an activity diary to help recognise triggers. Similarly, not overdoing it on good days can help to avoid wearing yourself out too much.
You can read more about pacing activity for people with ME/CFS on the Action for ME website.
5. Seek additional support
If you’re still struggling and would like some extra guidance, there are several organisations that offer information, practical advice, and support…
- Action for M.E – offers peer-to-peer support forums and practical assistance
- ME Association – provides support for people with ME, including a helpline
Final thoughts....
ME/CFS can have a significant impact on quality of life. However, while there’s currently no cure, there are things that can be done to improve symptoms.
Remember, everyone is different, so it’s important to look after yourself and take things at your own pace.
For further reading, head over to the health section of our website. Here you’ll find information on everything from important health checks to how to build confidence and self-esteem.
Do you have ME/CFS? Or do you know anyone who does? Is there any other advice you have for people coping with ME/CFS? We’d be interested to hear from you in the comments below.