​Whether you're a sufferer or a carer of someone with severe chronic fatigue syndrome (ME/CFS), long COVID or another debilitating chronic illness, you know how it robs quality of life. 😞
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With 25% of chronic fatigue syndrome sufferers being so sick they are housebound or bed ridden, it means that many people are limited in their ability to implement self-care strategies that others may take for granted. Things such as going for a walk or having coffee with a friend. To complicate things further, symptoms such as light sensitivity, noise sensitivity, food intolerances, brain fog, pain and mobility issues can make it hard to engage in some activities.
 
DON’T DESPISE THE SMALL THINGS
Finding small things you can do to bring some joy and calm into your day is essential. Think of these activities as tiny top ups to fill your cup.
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Below are some ideas that can really help people get through a day. Obviously, everyone is different and depending on your symptoms and severity some of these may even seem like too much. It’s important to give things a go (perhaps with the help of a carer) and find what works for you. 💙

​Pacing is the term given to the strategy of managing fatigue and other symptoms in chronic conditions including post-viral fatigue, Long Covid, fibromyalgia, chronic fatigue syndrome (ME/CFS) and many others.
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What this looks like can be slightly different for everyone, but it essentially means being strategic about how you coordinate your life scheduling rest around activities and listening to your body, stopping before your body reaches tipping point. This requires understanding your baseline (which can unfortunately fluctuate), recognising your triggers and structuring your day, week and even month accordingly.

The idea with pacing is to be one step ahead of your body to avoid flares and reduce the severity of post-exertional malaise otherwise known as PEM. PEM is a delayed exacerbation of symptoms (especially fatigue) that occurs in response to mental or physical exertion. For example, having to go out to a doctor’s appointment and doing a load of washing in one day could lead to a significant worsening of symptoms in the days following before returning to baseline. Some of you will know this pattern all too well! 

So, how can you get the most out of pacing?
Here are my 3 top tips for effective pacing.

Dysautonomia is the inability of the autonomic nervous system to regulate itself and is a common feature of Chronic Fatigue Syndrome (MECFS), Postural Orthostatic Tachycardia (POTS), Fibromyalgia and Long COVID.
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The autonomic nervous system consists of the parasympathetic (relaxation) and sympathetic nervous system and controls involuntary actions in the body including heart rate, blood pressure, digestive and bladder function. When the autonomic nervous system is constantly out of balance it can leave people with some debility symptoms which severely impact quality of life.

With the recent pandemic it is estimated that up to one third of people who test positive for the spicy cough will experience ongoing symptoms for months and sometimes years after their acute infection. Unrelenting fatigue is by far the most common.
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Chronic fatigue can occur after any infection however there are some viruses that have earned a reputation for this. Glandular fever (Epstein Barr Virus), Ross River virus, influenza viruses and of course our new favourite SARS-CoV19 are all common culprits. The biological impact of viruses on our human health is complex and there is still much to learn however there are few things we do know about why we might feel such extreme ongoing fatigue after infection.

MITOCHONDRIAL DAMAGE
Viruses can alter the internal workings of the mitochondria to allow them to replicate more efficiently. This can cause damage to the mitochondria resulting in a reduction of ATP (energy) production, increased oxidative stress (free radicals) and increased cell death. When mitochondria are impaired by viral damage our capacity to produce energy is significantly reduced.

CHRONIC LOW-GRADE INFLAMMATION
The invasion of a virus triggers the release of several pro-inflammatory cytokines (chemicals that promote inflammation). This response can continue some time past infection and higher levels of certain inflammatory chemicals have been observed in patients with post-infectious chronic fatigue syndrome (ME/CFS) and long COVID. When the inflammatory process doesn’t resolve the way it should, ongoing chronic inflammation can result and this is thought to play a role in ongoing post-viral symptoms.
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