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 down 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 are affected by ME/CFS in the UK.
Here, we’ll cover exactly what ME/CFS is, as well as causes, symptoms, and ways to cope.
What is chronic fatigue syndrome?
Chronic fatigue syndrome, otherwise known as myalgic encephalomyelitis (ME), 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 and constipation, excessive wind/bloating, indigestion and irritable bowel syndrome.
- Dizziness with or without nausea
- Flu-like symptoms
- 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 the onset of ME/CFS 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 between mid-20s and 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, and 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.
Can ME/CFS be treated?
Because there’s currently no direct cure for ME/CFS, treatment is centered around relieving symptoms.
Treatment varies from person to person and will depend on how ME/CFS is affecting you. Early diagnosis, therapy, and medication are all potential factors that can help.
We’ll cover some of the treatment 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 self-referral – or you can ask your GP to refer you.
However, as highlighted by NICE guidelines, it’s important to understand that while CBT may help with managing symptoms of CFS, it’s not curative.
For example, this research review suggests that CBT as a treatment for ME/CFS has a recovery rate close to 7%, which is almost the same of that of people who receive standard medical care (also 7%).
In its comprehensive evidence review for the October 2021 guideline, the NICE guideline committee also reported on page 376 that “[…] most of the clinical evidence showed no clinical difference but there was some benefit of CBT. They acknowledged there was some, but not consistent, evidence of benefit across the studies for general symptom scales, fatigue, physical functioning, exercise performance, return to work and adverse events when comparing CBT to usual care […]”
There aren’t any specific medications used to treat ME/CFS. However, medicine can sometimes be useful for relieving symptoms.
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’re having trouble sleeping or in pain.
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 and 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 GI carbohydrates to help avoid blood sugar spikes.
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 unrefreshed.
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, when you’re well enough to return to work, it can be a good idea to speak to your employer about things that might help. Your GP should also be able to advise you on any changes that could 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 support, there are a number of organisations that offer information, practical advice, and support…
ME/CFS can have a significant impact on quality of life. However, while there’s currently no cure, many people experience an improvement in symptoms with treatment and lifestyle changes.
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 everything from building confidence and self-esteem to counselling and motivation.
Do you have or do you know of anyone who has ME/CFS? Do you have any advice for coping with ME/CFS? We’d be interested to hear from you in the comments below.