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Audiobooks and ME/CFS

10 May 2019

Audiobooks can help ME/CFS sufferers by providing support during those long and lonely days when they are feeling the full force of their symptoms.                           

This week is ME Awareness Week, culminating with ME Awareness Day on Sunday 12th May.

Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is a debilitating chronic neurological condition that affects sufferers through a range of symptoms which differ from person to person. Although it is thought around 250,000 people suffer from ME/CFS in the UK, there is still much unknown and as a result those who aren’t familiar with the illness can struggle to understand exactly what it is and how patients are affected.

Symptoms and how they affect daily life

The symptoms of ME/CFS vary but they can include fatigue/exhaustion, being incapacitated by simple activities, generally feeling unwell, pain, digestive problems, sleep disturbances, concentration and memory problems.

It can range from mild to severe cases - from where the sufferer can still work or go to school but operate on a much reduced basis and stop all ‘extra’ activities - to being unable to do anything for themselves or even leave the house. This can leave patients with hours to fill and very little they can do to distract them from how they feel. Listening to audiobooks can help sufferers get from one moment to the next whilst providing a glimmer of an outside world that is not currently accessible through many other means.

“Then there was the aching, the dizziness, and the thick, milky cataract that grew over my mind. I remember lying in bed thinking about… the sybaritic pleasure of reading… I ached to luxuriate in words, my now inaccessible refuge. Reading was like catching water in your hands; the words pooled for a moment, then slipped and were gone.” (Vonny Leclerc)

Recovery from ME/CFS is possible, as in the case of teenage sufferer Vonny Leclerc above, although this can be after years of suffering and patients don’t always return to the level they were at before becoming unwell. Sadly others may never get better.

What this means for sufferers

ME/CFS impacts on everything: family, relationships, work or education, home life, independence. When sufferers are unable to function normally due to their physical condition they can’t carry out activities that we generally take for granted.

“I listened to tapes from calibre for a number of years, it was not my eyes that was a problem but I have physical problems/CFS and an inability to hold a book up. In fact the tape would finish after half an hour and I would hopefully be asleep!”

Calibre Member

It is still a much misunderstood condition which makes it all the more frustrating for sufferers; when friends and family don’t always understand it impacts the level of support they can give. And by its very nature the illness can prevent those suffering from being able to reach out to others as they are physically unable to do so. It is therefore very isolating.

How audiobooks can help

When you are house- or bedbound days can be long and uncomfortable. Even the act of reading can be too tiring to manage, which can be very restricting for some. Audio books can help regain some independence and provide a welcome distraction to everything else that is going on.

“A charity was mentioning about your service and people affected by ME/CFS and it came at a time when our daughter was affected quite badly. She had always enjoyed books but it tired her too much to read, so your service was a God-send. “

M. Hagen, Cumbria

Treatment and management

Because symptoms can vary greatly, the methods of treatment and management suggested will depend on the patient. These can include pacing, Graded Exercise Therapy (GET), Cognitive Behavioural Therapy (CBT), medication for specific symptoms (such as sleeping) and nutrition.

“Thanks to high levels of vitamin D supplementation I now have plenty of energy again and can enjoy life and reading my own books again. Thank you for your help!”

Hannah, Calibre member

It is also important to have a support network, whether it is friends and family or social care. If you know someone with ME/CFS then there are a number of simple things you can do to support them that will make a big difference. Technology is really helpful and makes it easy to stay in touch and include them, even if they may not be up to joining in. Respect their physical limitations and offer practical and emotional support. Listen to them and what they need, not what you think they need.

Sufferers talk about the huge benefit of finding positives to focus on every day, such as what they can do rather than what they can’t. Supporting them in that goal can be very rewarding for everyone.

“Calibre gave access to books while our daughter’s energy was too low, yet (let her) keep some independence”

Parent of a Calibre member

About Calibre Audio Library services

Calibre Audio Library is a national charity providing a subscription-free service of unabridged audiobooks for adults and children with sight problems, dyslexia or other disabilities such as ME/CFS, who cannot read print. A lifetime membership of unlimited borrowing is just a one-off payment of £35 (including VAT) for adults and £20 for under 16’s.

Click here or call our friendly membership services team on 01296 432 339 to join or for more information.

Resources

www.actionforme.org.uk

www.mesupport.co.uk

www.meassociation.org.uk

www.metrust.org.uk

www.tymestrust.org