What is CFS?
Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms, the most common of which is extreme tiredness. CFS is also known as ME, which stands for myalgic encephalomyelitis. There’s some debate over the correct term to use, but I will refer to the condition as CFS/ME.
CFS/ME can affect anyone, including children. It’s more common in women and tends to develop between your mid-20s and mid-40s. We don’t know what causes CFS/ME, but there are a number of theories – for example, it may be triggered by a virus or infection, a hormonal imbalance, or an underlying issue with the immune system.
The main symptom of CFS/ME is feeling extremely tired and generally unwell. In addition, people with CFS/ME may have other symptoms, including:
- Sleep problems
- Muscle or joint pain
- A sore throat or sore glands that aren’t swollen
- Problems thinking, remembering or concentrating (brain fog)
- Flu-like symptoms
- Feeling dizzy or sick
- Fast or irregular heartbeats (heart palpitations)
The severity of these symptoms can vary from day to day, or even within a day.
Diagnosis and Treatment of CFS/ME
Many symptoms of CFS/ME are similar to those seen in other illnesses, so it’s important to visit your GP to get a correct diagnosis.
Treatment for CFS/ME aims to help relieve your symptoms. CBT is often a key part of this. It can help you to:
- Accept your diagnosis
- Feel more in control of your symptoms
- Challenge feelings that could prevent your symptoms improving
- Gain a better understanding of how your behaviour can affect the condition
How Can CBT Help?
Constant fatigue is stressful. The physical symptoms threaten our health, but there’s also a social and economic impact. This stress can cause anxiety too. Even when you’re physically resting, if your mind is over-active, self-critical, or filled with worries, then you’re unlikely to feel fully rested.
The first thing I’d explore with you is your relationship with your fatigue and the other symptoms of CFS/ME. How are you currently coping? How are you managing your emotional environment alongside your ill health?
CBT is a practical form of talking therapy that helps us identify our thoughts, feelings, and behaviours. It also reveals the connections between them and the patterns of thinking they create in our minds.
Therapy gives you an opportunity to share your symptoms and struggles with someone who’s impartial and objective. Talking through our experiences provides clarity and reduces stress. Just hearing your inner-world spoken out aloud is a very powerful process in itself, helping you begin to see things in a different light.
Coping with CFS/ME requires acceptance and a good mindset, but our thinking is often very automatic. By making you more aware of your thoughts, a CBT therapist will show you how to alter negative thinking. They’ll teach you to look for the evidence that supports a thought and the evidence that doesn’t, before helping you reach a conclusion that’s more balanced and useful.
A key frustration for many people with CFS/ME is the way the illness fluctuates. Some days you’ll feel slightly better, and at other times you can feel a lot worse, often for no obvious reason.
When I work with people who have CFS/ME, I ask them to complete an in-depth journal for one week where they record their tiredness levels every hour. They also note down what they’re doing and how they’re feeling emotionally throughout the day. This process is very time consuming, but it reveals the fluctuations hour by hour and helps us begin another form of treatment – pacing.
You can learn more about the link between CBT and Journaling Here
When illness reduces your activity levels, it’s tempting to try and make up for lost time on better days. But cramming in too much activity when you’re feeling well often leads to a setback in your symptoms or a ‘crash’. This vicious cycle of ‘boom and bust’ is damaging to the recovery process, not to mention frustrating and unpleasant to live with.
Pacing involves scheduling activities and rests throughout your day, so you establish a routine that doesn’t exacerbate your symptoms. It aims to prevent the ‘boom and bust’ cycle, giving you more control over your illness and a healthy awareness of your limitations.
Using the information in your journal, you can establish a ‘baseline’, structuring your days to maximise your energy levels. A baseline is a level of activity that you can sustain on a regular basis. In other words, you must be able to do the same amount of activity regardless of the kind of day you’re having. When this is clear in your mind, you won’t be tempted to do more on a good day or forced to do less on a bad day.
Validation & Compassion
CFS/ME is an unseen or hidden illness. Many people don’t understand the condition and therefore minimise its severity and impact. Therapy can provide validation, helping you feel heard and understood. This kind of support is an important part of the recovery process.
Therapy should also help you create a compassionate narrative for your experience, softening how you relate to yourself and the condition. Being self-critical and feeling frustrated and angry are exhausting emotions to carry. You can read more about Compassion Focused Therapy here.
Living with CFS/ME can be incredibly difficult. Extreme tiredness and other debilitating symptoms can make it impossible to carry out everyday activities. As well as asking friends and family for help, the ME Association is a charity that provides information, support and practical advice for people affected by the condition.
The important thing to know is that there is a way forward.
If you have found this blog useful you may enjoy this podcast episode I did with Franky Shanahan on her experience of living with Chronic Fatigue https://sarahdrees.co.uk/episode-2/