A person’s self-image is a complex thing and finding out who they really are takes time. It’s a process that’s often shaped by the experiences and situations in which people find themselves, so it’s not surprising that some of us aren’t quite sure how to answer this question.
What we do know is that there is no one answer to this question and people’s descriptions will vary considerably – as they would for anyone. But there are some qualities that are usually described as being part of a person’s identity:
ME is a debilitating illness that can cause a range of symptoms including fatigue (often worsened by activity and not relieved by rest), memory problems, difficulty concentrating, unrefreshing sleep and pain, especially muscle and joint pain. Other symptoms may include a headache, dizziness, trouble regulating temperature and periods of bloating or constipation. ME can affect adults of all ages and can begin suddenly, most often after an infection but also following a significant hormonal shift such as menopause or pregnancy. It can also develop more gradually.
There is no specific laboratory test for ME/CFS so diagnosis is based on the pattern of symptoms. Other diseases that can cause similar symptoms must be ruled out before a person can be diagnosed with ME/CFS. Unfortunately, misdiagnosis is common.
It is thought that ME is caused by an abnormal immune response to a virus, but the precise cause remains unknown. There is also no evidence that ME is a result of emotional stress or a ‘poor diet’ and people with ME can be found in all socioeconomic groups and racial backgrounds.
Research is now starting to explore whether there is a genetic link for ME. It is hoped that this work will help identify the best targets for drug development.
Until there is a cure, the NHS must ensure that patients receive good care and support, particularly for those with severe ME. Campaigners are calling for a revolution in the NHS and for local ME services that are clinically led, with home visits for those most severely affected. They want to see regional specialist centres for ME and long Covid, and a national network of clinically-led teams to provide home visits for those with the most severe ME.
If you have recently been diagnosed with ME or if you are a carer for someone with ME, our booklet Newly Diagnosed contains advice for you and your GP, facts about ME, guidance to help you be an active partner in your own healthcare and information about existing guidelines. There are also many regional and national support groups that offer peer support, advice and information for people with ME/CFS. ALISS and Action for ME can help signpost you to these groups.