Things To Consider if you have Chronic Fatigue Syndrome (ME/CFS)

Chronic fatigue syndrome, which is also known as myalgic encephalomyelitis or simply ME/CFS, is a long-term health condition that is believed to affect more than 400,000 people in the UK. That’s according to recent research by the University of Edinburgh and is significantly higher than previously assumed, making it more common than other more highly publicised conditions such as Parkinson’s or multiple sclerosis.

The cause of ME/CFS is unknown and it can affect various parts of the body with a range of symptoms, the most common being extreme tiredness. It can also strike people of both sexes and all ages, although more women are diagnosed than men and it most commonly manifests in those aged from their late-30s to their mid-50s.

Although there is no cure for ME/CFS, there are therapies that have led to improvement in symptoms. Most people with chronic fatigue syndrome find that with the right support, and a few adjustments, they can manage the symptoms and successfully live with the condition.

Symptoms of chronic fatigue syndrome

There are four main symptoms of ME/CFS, which are extreme fatigue, insomnia, cognitive impairment and post-exertional malaise. Let’s take a look at each in turn:

1. Extreme fatigue – the extreme tiredness associated with ME/CFS cannot be alleviated by sleep or rest. Many people with ME/CFS describe their fatigue as overwhelming and different in nature to the normal sort of tiredness you feel after a busy day. Naturally, this can make it difficult or even dangerous to carry out everyday tasks such as working, driving or doing housework.

2. Insomnia – people with ME/CFS often also have serious problems with their sleep that do not get better. These problems include constantly waking up during the night, feeling unrefreshed, stiff or unwell on waking and feeling sleepy during the day.

3. Cognitive impairment – this is the medical term for what we might call “brain fog.” It is very common for people with chronic fatigue syndrome to experience problems with thinking, memory and concentration. For example, they might have difficulty focusing or more than one thing at a time, or struggle to remember certain words or names. Some people find they are slow to speak or react to things or people.

4. Post-exertional malaise (PEM) – symptoms of ME/CFS are often exacerbated by or get worse after activity. This is called post-exertional malaise, or PEM. It does not just apply to physical activity; PEM can also be triggered by mental activity, such as studying or even socialising with others.

These four symptoms are the most common. However, there are other symptoms of ME/CFS that some people experience. These can include the following:

• Headaches
• Muscle or joint pain
• Flu-like symptoms
• Nausea
• Dizziness
• Heart palpitations (fast or irregular heartbeat)
• Muscle spasms
• Intolerance to certain foods, chemicals or alcohol
• Hypersensitivity to light, sound, touch, taste or smell
• Hot flushes or cold chills

Living aids to support people with chronic fatigue syndrome

Many people with chronic fatigue syndrome experience mild or moderate symptoms that allow them to go about their day-to-day lives with only minor adjustments. However, 20 to 30 percent of people with the condition have severe symptoms that can be genuinely debilitating.

The right living aids are essential for helping those with ME/CFS to go about their lives as comfortably, independently and safely as possible. Of course, choosing which living aids are needed depends on the nature and severity of the symptoms and will vary from one person to the next. However, the following are examples of living and mobility aids that should be considered for people with chronic fatigue syndrome (ME/CFS).

Walking aids to conserve energy

A walking stick or cane – walking is the foundation of most daily activities, but if you feel unsteady due to ME/CFS, fear of falling can be as debilitating as physical symptoms. A walking stick provides both physical support and a sense of reassurance. For those with more severe balance problems, a rollator is a great alternative, as its four wheels provide a solid base of support.

How wheelchairs help with chronic fatigue

Did you know that one in three wheelchair users are capable of walking? The PEM that comes with chronic fatigue syndrome means it is easy to overexert yourself and then face the consequences for days or even weeks afterwards. Having a wheelchair can really ease things by reducing your energy expenditure. You can choose from a wide range of wheelchairs, from lightweight travel wheelchairs to high performance powerchairs with a range of more than 10 miles.

Mobility scooters are essential for longer journeys

A mobility scooter gives you the freedom to go where you want when you want without having to rely on the help of loved ones. It’s the perfect mobility aid for people with chronic fatigue syndrome who enjoy getting out and about and who treasure their independence. Like the wheelchairs, there are numerous choices to meet different needs and budgets, from lightweight models that can be folded up and put in the boot of the car to road-legal scooters that can travel 25 miles or more on a single charge.

Safety in the bathroom

More accidents happen in the bathroom than anywhere else in the home, and chronic fatigue syndrome increases the risk of you falling on a wet and slippery surface. There are numerous bathroom aids that can help you stay safer in the bathroom without having to compromise your privacy or dignity. Probably the single most popular and useful is a simple shower stool. There are different types available to suit all body types and support needs. Other bathroom aids include grab rails, toilet surrounds and even walk-in baths.

Coping with brain fog

When brain fog hits, simple tasks can suddenly seem incredibly complicated. One thing you need to be sure about is that you are taking any prescribed medication in the right amounts and at the right times. A pill box or organizer ensures you stay on top of this important task and reduces the risk of forgetting to take a pill or accidentally taking too many.

Sleep quality is vital

In severe cases, people with chronic fatigue syndrome can be bedbound for extended periods. But even with milder symptoms, it is important to be as comfortable as possible in bed to get the best quality of sleep. Electric profiling beds can bring huge benefits in terms of both comfort and safety, and are designed by medical experts to support posture and manoeuvrability needs.

Getting the help you need to manage chronic fatigue syndrome

There is no simple cure for ME/CFS, but there are ways of managing the condition. Treatment plans differ from one person to another. For example, some people with ME/CFS find that exercise programmes can help alleviate their symptoms, while for others it makes no difference or even makes the symptoms worse. So it is important to speak to your doctor, who will be able to help create a treatment plan that is tailored to your symptoms.

This plan is likely to include energy management, which is all about making the best use of your energy levels from day to day, without making your symptoms worse. Naturally, the mobility aids that you choose will be fundamental to this. Do not wait until you absolutely need a mobility aid before you get one, as you are likely to end up pushing yourself beyond your limits and making your condition worse.

As well as your doctor, there are specialist organisations that can provide support for people with chronic fatigue syndrome. These include The ME Association and Action for ME. For more advice on living with chronic fatigue, read Pippa Stacey’s CareCo column, where she talks about living with ME.