How nurses can support people with ME

Often referred to as the ‘invisible illness’, ME can be a highly debilitating condition

Often referred to as the ‘invisible illness’, ME can be a highly debilitating condition

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Before I became ill with myalgic encephalomyelitis (ME), I was a nursing student. I completed almost two years of a four-year master’s degree in nursing science, and I loved it.

Until I was diagnosed with ME I had never heard of the condition. It was never mentioned or taught on my course, despite me undertaking modules in paediatric nursing – ME is the most common cause of health-related long-term school absence – and neurology.

ME, sometimes diagnosed as chronic fatigue syndrome (CFS), is a fluctuating, chronic, neurological condition with symptoms affecting many body systems.

The condition affects about 250,000 adults and children in the UK, yet there are still gaps in knowledge about how severe and debilitating it can be, and how varied its symptoms are.

ME is not simply ‘feeling tired’

Lack of understanding of ME is pervasive and those of us who have the condition often have to say it is not simply ‘feeling tired’.

People with ME experience post-exertional malaise, in which the body and brain cannot recover after expending even small amounts of energy.

Any activity that pushes us beyond our personal tolerance threshold, which varies from person to person, results in ‘payback’ that can leave us utterly debilitated for days, weeks or even months.

Many people are unaware of the multitude of other symptoms of ME, including pain and sensory overload, flu-like symptoms, and problems with concentration, thinking and memory (‘brain fog’).

Symptoms and severity vary from person to person, and can fluctuate and change over time. We cannot predict how severe our symptoms may be from one day to the next.

Someone experiencing mild ME can, with careful pacing, work and take part in other activities. But for those more severely affected, the condition is life changing, and one quarter of people with ME cannot move much beyond their bed or house.

It can be difficult for these people to travel unaided to GPs, clinics or hospitals, which means they often miss out on appropriate healthcare unless regular home visits can be arranged.

For people with ME, attending appointments is challenging

This is relevant to nurses because, for individuals with ME, attending appointments may have been a huge challenge, and they are likely to suffer ‘payback’ afterwards.

So, if possible, offer them appointments at less busy times of day and try not to keep them waiting too long. Also remember that, for someone with an ‘invisible illness’ such as ME, a noisy waiting room or clinic can be excruciating and fluorescent lighting difficult to tolerate. Allowing people with ME to wait in a quiet side room could make a huge difference.

Someone who experiences sensory overload may need to wear ear defenders and/or sunglasses. They may need blinds closed or conversations to be whispered, and to be offered ‘downtime’ if things are getting too overwhelming. Furthermore, as cognitive skills can be limited, it may be helpful to suggest that they bring someone with them to appointments and examinations, especially if they want detailed notes taken.

Someone with severe ME may need help with basic activities, such as holding a cup or being fed. You may find it useful to speak with your colleagues in palliative care for further tips, as this nursing approach often tends to be more helpful than a rehabilitative one.

I have encountered many healthcare professionals who understand these issues well. My care agency nurse, for example, has been amazing in taking steps to understand the impact of the condition. My home carers treat me with dignity, care and respect. They understand the emotional impact of ME and how it can make you feel when, for example, you can manage to wash only once a week. This emotional side can often get forgotten about.

I miss being in education. I want to go into child psychotherapy, and I hope one day I will be well enough to go back to university and pursue my dream. For now, I’m using my limited energy to improve awareness and understanding of ME so that everyone with the illness can access the care and support they need.

Find out more

  • Up-to-date information on treatment and management of people with ME is available at Action for ME website
  • Information on living with ME is available in the late Emily Collingridge’s book, Severe ME/CFS: A Guide to Living

Naomi GilchristNaomi Gilchrist is a former nursing student who has ME

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