Living with chronic fatigue syndrome can sometimes feel like a hopeless situation, but healing is possible when you decode it, says Alex Howard, a health expert specialising in this subject. It all starts with learning to listen to your body…
By Alex Howard
‘It’s probably just depression – stop thinking about it and get on with things.’ This is the kind of “advice” that’s routinely given to people suffering from fatigue.
Although the words might vary, the message is the same: ignore your body, push through and you’ll feel better. It’s one thing when it comes from well-intentioned family members, but it’s another when medical professionals use the very same words.
But where does this position come from? With millions of people suffering so severely, such an approach must be based on real evidence? Well, yes… but things aren’t quite as they seem.
The 2011 Pace Trial study into chronic fatigue syndrome (CFS)
In 2011, a paper was published in the British medical journal The Lancet that shared the findings of one of the largest ever studies into chronic fatigue syndrome (CFS/ME).
The PACE trial randomised 641 participants into a four-armed study looking at cognitive behaviour therapy (CBT), graded exercise therapy (GET), adaptive pacing therapy (APT) and specialist medical care (SMC).
In the UK, CBT and GET are used in conventional medicine for working with people with chronic fatigue syndrome. The underlying premise is that fatigue is a state of deconditioning in the body and that the sufferer has become habituated to feeling tired.
By changing unhelpful thought patterns and reconditioning the body, a path to recovery can be found. In essence, the hidden assumption is that the fatigue isn’t biological in nature, and that changes in behaviour will help the sufferer to realise this.
In the trial, it was claimed that over 12 months, two of the therapies, CBT and GET, were more effective in improving patient-reported fatigue and physical functioning than either APT or SMC alone. However, the credibility of the PACE trial has since been systematically dismantled at every level.
The impact of bad science on chronic fatigue syndrome management
I don’t think it’s possible to exaggerate the damage done by this research, and other studies like it. It’s not only the impact of incorrect advice, which causes people constantly to push through, do too much and therefore become more severely fatigued; such research also fuels the cultural misunderstandings around fatigue and the idea that it’s all in the mind.
The heart of the matter is, if you suffer from fatigue and you’ve spoken to conventional medicine professionals, you’ve likely been given the message you need to stop feeling sorry for yourself and just get on with it. However, this is literally the opposite of what you should be doing.
So, should you just do nothing and wait until you feel like you have energy? Maybe, but not necessarily. The thing is, fatigue is real and you can’t “push” yourself better. And, often, you can’t just do nothing and rest yourself better either.
What you need to do is heal yourself better. You need to address the underlying physical and psycho-emotional issues.
How do you listen to your body?
To answer this, you’re going to have to learn a new language: that of listening to your body. Your body has extraordinary wisdom and it’s attempting to communicate with you all the time. The question isn’t whether the messages are there, but whether you’re listening to them.
If you’ve spent a lifetime learning to override and ignore your body, learning to slow down, listen to and decipher its communications will take time. And the situation isn’t made easier by the fact that it’s rarely one communication – often, your body is saying a load of contradictory things simultaneously, and your job is to decipher all of this and figure out what you need to do.
So, the first step in learning to listen to your body means doing just that – listening. Not getting angry with your body, not pushing it, not trying to coax it into doing more. No – really, truly, honestly listening. When you do that, how does your body actually feel?
Questions to help you listen to your body:
- When you do a particular activity, does it give you more energy or less?
- Do you have to keep pushing yourself to get through your daily routine? Or, if you stay connected and listening to your body, does your energy level stay constant?
- When you go to bed at night, do you feel as if you still have a little energy left in the tank or are you totally spent?
- When you wake in the morning, do you feel like getting up, or do you have to force yourself to do so?
The four types of tiredness
My friend and colleague Anna Duschinsky noticed that all tiredness is not the same and identified four different types of tiredness. This model is incredibly simple and immensely helpful.
Type 1: Mental tiredness – when your mind is overtired
SIGNS AND CAUSES: Signs of mental tiredness can be struggling to find words, brain fog or a sense that your mind is unable to settle. Mental tiredness is often caused by an anxiety pattern pushing your mind into overdrive.
HOW TO HELP IT: The best resolution for mental tiredness is to allow your mind to rest by reducing stimulation. You might find that anything from watching mindless TV shows to listening to podcasts acts as a helpful distraction and allows your mind to settle; or you might find you need to reduce your exposure to noise and light and let your brain have full rest.
Type 2: Emotional tiredness – when you’re emotionally drained
SIGNS AND CAUSES: Signs of emotional tiredness are being emotionally sensitive or reactive and feeling at your limit emotionally. You’ll often overreact to small things and lack resourcefulness – as if you don’t have the emotional capacity to take on anything else.
HOW TO HELP IT: Taking some time away from the source of your emotional overwhelm is likely important. This may involve setting firmer boundaries with other people, taking uninterrupted time alone, and allowing yourself to feel into and connect to yourself emotionally. Avoiding your emotions is rarely an effective strategy. To process and digest your emotions, you need to feel them.
Type 3: Physical tiredness – when your body is overtired
SIGNS AND CAUSES: Signs of physical tiredness are aching muscles and physical weakness – the feeling that all you want to do is lie down and rest.
HOW TO HELP IT: The key to overcoming physical tiredness is listening to your body and working with your ‘baseline’. This can sometimes require periods of deep physical rest and working to build up your energy reserves, so you don’t run out of energy so quickly when you’re active.
Type 4: Environmental tiredness – feeling drained by a lack of variety in your physical environment
SIGNS AND CAUSES: A sense of flatness and apathy, feeling drained by small things, and a sense of despondency and hopelessness can all be signs of environmental tiredness. In fatigue, the usual cause of environmental tiredness is being limited in energy. Therefore spending increasing amounts of time in the same small space.
HOW TO HELP IT: If you have the physical energy to do so, changing your environment can help. If you can’t change location, changing things within the space can be helpful. For example, moving furniture around, redecorating a room in which you spend a long time, or simply lighting a scented candle.
Another simple tip is to avoid spending the whole day in bed. If you’re housebound or partially bedbound, relocating to the sofa, even for some of the day, can help give you a lift.
It’s important to bear in mind that with each of these types of tiredness, when your overall energy is low, you’ll reach your limits on them more quickly. However, using this model enables you to address what you actually need.
Exploring the importance of listening to your body helps you decide what to do next. Be it resting, following a routine or having a structure.
Fatigue is a complex, multifaceted condition, so it’s worth checking out Decode Your Fatigue: A Clinically Proven 12-Step Plan to Increase Your Energy, Heal Your Body and Transform Your Life (£14.99, Hay House) by Alex Howard for more great advice and how to work out your own treatment plan.