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"Understanding the Impact of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) on Daily Life"

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have severe fatigue and sleep problems.

ME/CFS may get worse after people with the illness try to do as much as they want or need to do. This symptom is called post-exertional malaise (PEM). Other symptoms can include problems with thinking and concentrating, pain, and dizziness.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex illness.

People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have overwhelming fatigue that is not improved by rest. ME/CFS may get worse after any activity, whether it’s physical or mental. This symptom is known as post-exertional malaise (PEM). Other symptoms can include problems with sleep, thinking and concentrating, pain, and dizziness. People with ME/CFS may not look ill. However,

  • People with ME/CFS are not able to function the same way they did before they became ill.

  • ME/CFS changes people’s ability to do daily tasks, like taking a shower or preparing a meal.

  • ME/CFS often makes it hard to keep a job, go to school, and take part in family and social life.

  • ME/CFS can last for years and sometimes leads to serious disability.

  • At least one in four ME/CFS patients is bed- or house-bound for long periods during their illness.

Anyone can get ME/CFS. While most common in people between 40 and 60 years old, the illness affects children, adolescents, and adults of all ages. Among adults, women are affected more often than men. White persons are diagnosed more than other races and ethnicities. But many people with ME/CFS have not been diagnosed, especially among people from racial and ethnic minority groups.

Lifestyle changes - Things you can do?

As well as specialist treatments for ME/CFS, making lifestyle changes can also help.

Diet and supplements

It's important you eat regularly and have a healthy, balanced diet. You should be offered practical advice about how to achieve this if, for example, your ME/CFS symptoms are making it difficult for you to shop or prepare food.

If you feel sick, eating starchy foods, eating little and often, and sipping drinks slowly may help. If this does not work, medicine can be prescribed.

Diets that exclude certain food types are not recommended for people with ME/CFS. There's also insufficient evidence to recommend supplements, such as vitamin B12, vitamin C, magnesium, or co-enzyme Q10.

Sleep, Rest and Massage Relaxation

You may have sleep problems that make your ME/CFS symptoms worse. For example, you may:

  • have problems getting to sleep

  • have unrefreshing or restless sleep

  • need an excessive amount of sleep

  • sleep during the day and be awake at night

You should be given advice about how to establish a normal sleeping pattern. Having too much sleep does not usually improve the symptoms of ME/CFS, and sleeping during the day can stop you sleeping at night.

You should change your sleep pattern gradually, and your doctor should review how it's going regularly. If your sleep does not improve after making changes, you may have an underlying sleep problem that will need to be addressed.

It's likely you'll need to rest during the day, and your doctor should advise you about the best way to do this. For example, they may suggest limiting each rest period to 30 minutes and teach you relaxation techniques, such as breathing exercises.

If you have severe ME/CFS and need to spend much of your time in bed, it can cause problems, including pressure sores and blood clots. These problems, and how to avoid them, should be explained to you and your carers.

Setbacks or relapses

A setback or relapse is when your symptoms get worse for a period of time.

They're a common part of ME/CFS and can be caused by a number of factors, such as an infection or an unplanned activity. Sometimes there's no clear cause.

The doctors treating you can help you manage a setback or relapse by:

  • including more breaks with your current levels of activities

  • teaching you relaxation and breathing techniques

  • encouraging you to be optimistic about your recovery

Benefits of having regular massages

  1. Reduces aches and pains.

  2. Decreases stress and anxiety levels.

  3. Improves energy levels.

  4. Relieves tension headaches.

  5. Reduces water retention.

  6. Promotes hair growth.

  7. Aids recovery after sport.

  8. Get a better night's sleep.

Page last reviewed: 21 March 2024

Next review due: 21 March 2025

By Marc Nurse

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