Chronic fatigue syndrome/ME
Chronic fatigue syndrome (CFS), also known as myalgic encephalopathy (ME) is a long-term condition that can make it difficult to carry out daily activities, lead to changes in lifestyle, and can affect a person's emotional and mental health.
Here, we'll explore what CFS/ME is in more detail, including symptoms, treatment, and how counselling can support those living with it.
What is CFS/ME?
Chronic fatigue syndrome (CFS), also known as myalgic encephalopathy (ME) is a condition that affects the nervous and immune systems, with the most common symptom being fatigue.
The ‘fatigue’ element of CFS is more correctly called post-exertional malaise or PEM. PEM does not go away, no matter how much you rest. People with CFS/ME/CFS experience pain and extreme fatigue after using even small amounts of energy, whether this is physical or mental. Something as simple as brushing your own hair can cause pain and exhaustion that persists for the rest of that day. This differs from ordinary tiredness.
Many who have recently succumbed to long covid have reported symptoms that bear a striking similarity to those of ME. Whilst chronic fatigue is one of the symptoms of all three definitions (ME, CFS and long covid), like ME, long covid involves much more than just tiredness and fatigue.
ME/CFS is recognised as a neurological disorder by the World Health Organisation and there are an estimated 250,000 people affected in Britain. For many with CFS, the risk of developing anxiety, depression and other mental illnesses increases.
Psychodynamic counsellor Angela Simmons explains what CFS, ME and long covid are and how counselling can help manage the emotional impact of living with them.
There are several different terms used when describing this condition, including:
- chronic fatigue syndrome (CFS)
- myalgic encephalopathy (ME)
- post-viral fatigue syndrome (PVFS)
- chronic fatigue immune dysfunction syndrome (CFIDS)
Because of the multiple terms, many bodies (including the NHS) use the blanket term CFS/MEME/CFS/CFS. This has caused enormous controversy as it is generally understood that there are differences between ME and CFS.
There has been much effort from ME and CFS experts and charities to differentiate between the two conditions. While the debate continues, the overlap in symptoms and treatment approaches means that many medical professionals refer to ME and CFS as the same condition. For this reason, we will continue to use the terms chronic fatigue syndrome or CFS/ME on this page.
Symptoms of CFS/ME
Along with fatigue, you may be affected by painful joints/muscle pain, poor memory and disordered sleep. Other common symptoms include:
- taking a long time to recover after activity
- problems sleeping
- troubles with memory, concentration and thinking
- sore throat
- feeling generally unwell
- flu-like symptoms
- heart palpitations
- sensitive to light and sound
- hard to control body temperature
Symptoms can vary in their severity daily, so some days may be more manageable than others. If you suspect you may have CFS/ME, we recommend seeking a professional diagnosis from a doctor or other healthcare professional. As there are no identifiable tests for CFS/ME and the symptoms are similar to other illnesses, a diagnosis will often be considered if you do not get better as quickly as expected.
Those with chronic fatigue syndrome will experience symptoms at varying levels of severity. According to the National Institute for Health and Care Excellence, the following definitions of severity offer a guide to the level of impact symptoms have on everyday functioning.
- Mild - You are able to care for yourself, but you may need support and you may experience difficulties with mobility. You will likely be able to continue working/education, but leisure and social pursuits may have stopped. You often need days off to rest to cope with the rest of the week.
- Moderate - Your mobility is reduced and day-to-day activities are affected (though you may experience peaks and troughs in symptoms and your ability to do activities). You may have to stop working/education and need regular rest periods. Your sleep will likely be disturbed and of poor quality.
- Severe - You are unable to carry out day-to-day activities or can carry out minimal tasks, like brushing your teeth. You may need a wheelchair for mobility and experience severe cognitive difficulties. You may be unable to leave the house or experience a prolonged after-effect if you do. You will likely spend a lot of time in bed and experience sensitivity to light and sound.
- Very severe - You will be dependent on others for care and will be in bed all day. You will require help with daily tasks, including personal hygiene and eating. Some people may require a feeding tube if chewing/swallowing becomes difficult. You will be very sensitive to sensory stimuli.
What causes CFS/ME?
It's not known exactly what causes CFS/ME, but there are a number of potential triggers:
- a viral infection (e.g. glandular fever)
- a bacterial infection
- a weakened/problematic immune system
- hormonal imbalances
Is CFS/ME a mental illness?
Whilst CFS/ME is not a mental illness, it can affect mental health. The condition impacts people physically, making everyday tasks incredibly difficult. It can take you away from work and away from your friends.
The physical symptoms and their implications can increase the chance of developing mental health conditions like anxiety and depression. These problems may then in turn worsen symptoms.
The condition is long-term, so treatments are designed to help you manage symptoms and get the most out of daily life. This may involve a combination of physical and psychological approaches.
The physical impact of CFS
The National Institute for Health and Care Excellence (NICE) has acknowledged that the physical symptoms of chronic fatigue syndrome can be as disabling as rheumatoid arthritis, multiple sclerosis, lupus and other chronic conditions.
Many people with the condition feel the term 'fatigue' does little to explain how it feels. The way energy levels are affected by chronic illnesses like CFS/MEME/CFS can perhaps best be explained using the spoon theory, invented by Christine Miserandino.
Effectively, the theory describes energy levels in more tangible terms - spoons. Imagine you have 10 spoons in your hands. In order to do any task, you must throw away one spoon. Once you run out of spoons, you cannot do any more tasks. You may have to make decisions as to what tasks you do and do not carry out, and it may take you days to recover and replenish your spoons (this is called post-exertional malaise - a period of exhaustion following physical exertion).
As well as this extreme tiredness and difficulties concentrating, many people with CFS endure a great deal of physical discomfort. This may be through muscle pain, gastric disturbances, headaches or even sore throats.
When looking at the physical effects of CFS/ME, the success of treatments and therapy options differ, but the following may help:
A management strategy that many people with chronic fatigue syndrome find useful is called pacing. This involves planning out the day ahead to balance activities with rest. The aim is to keep you as active as possible, without causing relapses from over-exertion.
The idea behind pacing is to help you make your limited energy levels go further, rather than setting targets to be more energetic. The ultimate aim is to help you create a routine you can use long-term to maintain energy levels.
Your doctor may prescribe certain medications to help lower pain levels, reduce gastric symptoms and/or aid sleep.
The psychological impact of CFS
Having to deal with the physical impact of chronic illnesses can be incredibly difficult. For some, this leads to low mood, anxiety and/or depression. It's worth noting that depression itself is not a symptom of chronic fatigue syndrome, it is a condition that can develop as a result of having to cope with the physical and social implications of having CFS/ME.
You may find that your confidence is also affected. You may worry about leaving the house, or that people you talk to won't understand your condition. While chronic fatigue syndrome is not a mental illness, mental health is often affected.
Just like your physical symptoms, your psychological symptoms can be addressed as part of your treatment plan. Below we look at some of the most popular options.
Please note: Depending on the severity of your condition, talking therapies might not be possible/beneficial. We advise you to consult your medical team to discuss what will be most helpful for you.
Many people find it useful to seek professional support to help them cope with the psychological impact of CFS/ME. Some types of counselling you may want to consider include:
Person-centred therapy can be a helpful approach to explore as it puts the client in the position of 'expert'. Your therapist will understand that you know yourself best, allowing the therapy to centre you.
This approach emphasises the importance of autonomy and respect for you as the expert. This can help you regain a sense of worth and, ultimately, power over how you cope with CFS.
Mindfulness-based stress reduction therapy (MBSR)
This form of therapy takes key elements of cognitive therapy and combines them with mindfulness practice. The theory behind mindfulness is that our anxieties tend to lie either in the past or in the future. Mindfulness helps people focus on what is happening in the present moment in a bid to reduce stress and lower anxiety and stress.
Mindfulness-based cognitive therapy may be able to help relieve associated stress, depression and insomnia that come with CFS/ME.
For some, complementary therapies help to provide respite from certain CFS/ME symptoms. Acupuncture, massage and relaxation therapy are particularly favoured. Patient surveys have also found meditation to be among the most helpful.
The social impact of CFS
Living with any chronic condition can be socially isolating. There will likely be days when you can't face going out to see your friends and you may feel like they don't understand.
Everyone reacts differently to news about illness, some people shy away, thinking it's best to let you get on with things by yourself. This is where communication is required, to explain your condition, how it makes you feel and what support you find useful from friends and family.
Reaching out to your friends and family is a great first step. You may also seek support from other people with chronic illnesses. Sometimes talking to others who know the symptoms and emotional impact is a comfort.
Explaining your condition to friends
Some people don't understand what CFS/ME is or how it affects you. When you tell people, try to explain in a way they will understand. As mentioned previously, the spoon theory is a great way of conveying what it's like to live with a chronic health problem.
Whether physical meetings or online forums, support groups allow you to connect with other people going through chronic illness. This is a great arena to both gain and provides support. You can even swap tips and talk about what's helped you.
How can counselling support you?
If you have been diagnosed with CFS/ME, you can be affected in a number of different ways. As the condition is multi-faceted, it is often a multi-faceted treatment programme that is the most successful.
I was initially slightly apprehensive as I was unsure if her way of working would complement what I was already doing. However, I found my therapist's approach very much complemented what I was already doing. She introduced me to new techniques such as visual journaling, which I found helpful in identifying deep-seated emotions.
Many people with a chronic illness find it an isolating and frustrating experience. Therefore, it can be incredibly useful to talk about your feelings to someone objective who can offer support - like a professional.
Counselling offers you space to talk about how your condition affects your life and how you feel. If you have developed depression or anxiety, counselling can help you improve symptoms and create coping mechanisms.
If you'd like to find out more about how a counsellor or therapist can support you, we recommend reaching out to a few professionals to find one best suited to you.
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