What’s it like to have ME/CFS?

Julie, a 48 year old Professional

Julie has suffered from Chronic Fatigue Syndrome for more than 8 years. She no longer works as a lawyer because ME/CFS has meant that there is no certainty to her life.

Patricia, a mother of 11 year old boy with CFS

Patricia has an 11 year old son who is now almost through the worst of his battles with ME/CFS. Patricia speaks openly and freely about the problems of dealing with the many and varied symptoms.


Tess, a University Student

Tess is a 21year old student. She says she is now through the worst of her three year long battle with ME/CFS. In the process she says she learnt a great deal about herself.


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The impact of ME/CFS

Having ME/CFS has a significant impact on educational and employment opportunities and social and family life because people with ME/CFS are simply not well enough to participate fully.

Much sleep is often needed in the acute, early phase of ME/CFS. It is not uncommon for people to spend 18 -23 hours of the day in bed either asleep or trying to sleep and the rest of the time on the couch.

This situation generally improves over time such that there are often periods during the day when they feel a little better and are able to engage in some form of activity, even if very limited. After relatively little physical and/or mental exertion they start to experience a worsening of symptoms, and will take a disproportionate amount of time to regain pre-exertion levels of function, often 24 hours or more. The onset of this post-exercise exhaustion can also be delayed, sometimes several days. The amount of activity that can be undertaken before symptoms worsen varies from person to person.

Most find that climbing stairs and slopes, walking far, heavy lifting, bending, standing still, sitting upright for long periods, driving distances, repetitive actions (chopping vegetables, brushing hair), long conversations and mental activity exacerbate symptoms.

Many require help with transport, shopping and household chores and, for some, ordinary tasks of personal care such as showering and dressing may be more than they can manage without feeling worse – resting or going back to bed after washing and dressing is a common occurrence. The more severely affected require a wheelchair and others are bedridden for months or years and dependent on others for all care.


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