Author: Claudia Conway
Photo by: Mel Elias via Unsplash
ME, also known as chronic fatigue syndrome (CFS), is a complex, multifactorial disease that around 17 million people may live with worldwide [How many people have ME/CFS? (meresearch.org.uk)]. ME stands for myalgic encephalomyelitis, which has since been discovered not to be an accurate medical term for the condition, but is still used as an acronym given its familiarity.
I am very familiar with the condition because my mother’s health suddenly collapsed when I was 15 – she remained confined to her bed for around six months and it was another six months before she could start leaving the house – during this time she was diagnosed with ME/CFS, which was then only in the early stages of being recognised medically.
The causes of CFS/ME remain unknown, though it often develops after viral illnesses – Long COVID appears to be very much the same condition – and for most it remains a lifetime affliction, but one that can be managed unless very severe. Fatigue is of course the best known symptom, but what people often do not realise is that this goes along with other debilitating issues that can include inability to sleep at night, muscle and joint pain, headaches, brain fog and more.
Each person with ME/CFS is affected differently – some are unable to get out bed or walk more than a few steps unsupported and need to use wheelchairs; others may be less affected physically, but their concentration and focus is so impaired that they cannot work or study.
Diagnosis can still be difficult to achieve, with little medical training and sadly some skepticism remaining within the medical community despite clear evidence that the condition is very real – indeed, it’s not new. Anyone with ME/CF who reads a classic novel featuring a character who has ‘taken to her bed’ or ‘suffers from nerves’ and can’t stand loud noises or bright lights will likely recognise these kinds of symptoms. The wide array of symptoms and lack of any physical test to detect it means it is generally diagnosed by ruling out any other possible causes.
There is no cure for ME/CFS, and no one-size-fits-all treatment, but there are various ways to manage living with it – some medications may, for example, help restore sleep patterns, and pacing is the most widely-recognised method of self-management. This means balancing up activities and rest so that the individual does not overexert themselves and trigger severe symptoms. By following this system many people with ME/CFS can live close to a normal life – it is the management technique that has been found to help the largest proportion of sufferers, around 80% [Information About Pacing (afme.org.uk)]. Graded exercise, where a person gradually builds up to greater physical activity can help some people, but must be employed carefully and under medical supervision – it is not suitable for all people with ME/CFS.
For my mum, amitriptyline medication to help regulate sleep at night, along with pacing, enabled her to take on part-time work, but for her, as with anyone living with ME/CFS, it was a process of trial and error to find the right solution.
Helping people with ME/CFS
There are many of us with ME/CFS in the workforce – most of all we will need your understanding. It’s best not to compare one’s own tiredness with that of someone with the condition, even if trying to be supportive – author Lauren Hillenbrand has described ME/CFS exhaustion as being ‘to fatigue what a nuclear bomb is to a match’. The main thing is to listen to your colleagues and ask what you can do to help if they are struggling with their health.
We need understanding from managers and may sometimes require take time off, work from home, or possibly have our workloads reduced from time to time so we can work around the condition if we are experiencing a period of more acute symptoms.
One of the best ways to help is simply to find out more so you can understand the challenges that people living with CFS/ME can face; the resources below are good starting points.
NHS information on ME/CFS Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) - NHS (www.nhs.uk)
Association for Myalgic Encephalomyelitis: www.afme.org.uk – free resources on the condition
Action for ME: Action for ME – support and campaigning organisation for those living with ME and their families
The documentary ‘Unrest’ gives insight into life with severe ME/CFS around the world UNREST