If you have chronic fatigue syndrome (CFS), you will experience extreme tiredness that does not go away, no matter how much you rest. Along with fatigue, you may be affected by painful joints/muscle pain, poor memory and disordered sleep.
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 the CFS, the risk of developing anxiety, depression and other mental illnesses increases. On this page we will look into living with chronic fatigue syndrome and the physical, emotional and social implications.
Before we begin, it is worth noting that there are several different terms used when describing this condition, including:
There is no internationally agreed definition of the illness and many bodies (including the NHS) use the blanket term ME/CFS. This has caused 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. However, whilst the debate continues the significant overlap in symptoms and treatment approaches means that many medical professionals refer to ME and CFS as the same condition.
For this reason (and for the sake of clarity) we will continue to use the terms chronic fatigue syndrome or ME/CFS on this page.
The short answer to this is no. The long answer is that it is a neurological disorder that may involve both physical and psychological factors. There have been controversies regarding the nature of chronic fatigue syndrome, and whether or not the illness is primarily physical or psychological in nature.
Here is what we do know - the illness is recognised as a neurological disorder. It impacts you physically, making everyday tasks incredibly difficult. It can take you away from work and away from your friends.
The physical symptoms and their implications increase the chances of developing mental health conditions like anxiety and depression. These mental health 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 typically involves a combination of physical and psychological approaches.
If you've been diagnosed with CFS and want to know more about how talk therapy can help, we recommended you contact a counsellor who has experience in this field.
Those with chronic fatigue syndrome tend to fall into the following categories:
Mild - You are able to take care of yourself, but may need to take days off to rest and recover.
Moderate - Your mobility may be compromised and symptoms vary. You may experience sleep disturbances.
Severe - You are able to carry out very minimal tasks, like brushing your teeth, but your mobility is seriously affected and you may struggle to concentrate.
If you have been diagnosed with ME/CFS, you will 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.
Further on in our page we will talk about some of the specific psychological therapies that are advised for those with chronic fatigue syndrome. Here, we just want to highlight how helpful it can be to talk.
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.
Ultimately, talking to a counsellor is a way of gaining extra support as you tackle a serious and complex condition. Below we go into more detail about what can help you with the various impacts of ME/CFS.
I was lucky to find a really good local therapist who understood M.E. to help me continue my progress. 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.
Even in mild cases, chronic fatigue syndrome impacts on several areas of your life. The nature and frequency of symptoms will vary in each case. Some may make good progress and recover, while others may become confined to bed for months or even years. Some say they never feel exactly the same as they did before, but recover enough to live fulfilling and happy lives.
What's important to remember is that there is support available and that you don't have to go through this alone. Below we look at the impacts of ME/CFS and how you can cope with them.
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 ME/CFS can perhaps best be explained using the spoon theory.
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 look at the physical effects of ME/CFS, 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 premise 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.
Graded exercise therapy (GET)
This is more of a structured exercise programme that looks to gradually increase the amount and intensity of exercise you do. This should be tailored to your specific symptoms and be supervised by a medical professional. GET can be effective in milder cases of the condition, but some have found it to be detrimental. They key in all management strategies is to find what works best for you and your individual case.
Your doctor may prescribe certain medications to help lower pain levels, reduce gastric symptoms and/or aid sleep.
Having to deal with the physical impact of chronic illnesses on a daily basis can be incredibly frustrating. 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 ME/CFS.
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 also need addressing as part of your treatment plan. Below we look at some of the most popular options.
As mentioned previously, many people find it useful to seek professional support to help them cope with ME/CFS. In some cases, certain therapies are recommended, such as cognitive behavioural therapy. Some people however simply benefit from talking about their feelings and frustrations.
Other types of counselling you may want to consider include:
Cognitive behavioural therapy (CBT)
This type of therapy aims to help you manage chronic fatigue syndrome, by changing the way you think and behave. The overall goal of CBT is to reduce your distress associated with the condition. The therapy does this by breaking down overwhelming problems into smaller, more manageable chunks. It also looks to change the negative cycle of thoughts, feelings, physical sensations and actions.
If you want to try CBT, it can help to look for a counsellor who has experience of working with ME/CFS or other chronic conditions.
Mindfulness-based stress reduction therapy (MBSR)
This form of therapy takes key elements of cognitive therapy described above and combines it with mindfulness practice. Mindfulness was originally a Buddhist meditation technique that has now evolved and made its way into the world of modern psychology.
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. The technique has so far proved effective with those suffering from anxiety and depression, and is now being applied to other areas.
In regards to ME/CFS, mindfulness-based cognitive therapy may be able to help relieve associated stress, depression and insomnia. While recovery rates using the therapy are yet to be established, studies have shown that it can form part of an effective treatment plan for those with chronic fatigue syndrome.
For some, complementary therapies help to provide respite from certain ME/CFS symptoms. Acupuncture, homeopathy and relaxation therapy are a few which are particularly favoured. Patient surveys have also found meditation to be amongst the most helpful.
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 fatigue syndrome. 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 ME/CFS 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 provide support. You can even swap tips and talk about what's helped you.
You can use our events section to find support in your area.