ME is a complex illness with no cure yet. It can cause a range of debilitating symptoms, including chronic fatigue, sore throats, tender lymph nodes in the neck and armpits, headaches, bloating and indigestion, sensitivity to light and sound and a sense of being unwell all the time. People with ME can often experience problems with their mental health. They may become withdrawn and unable to concentrate or think clearly. It can be difficult to explain the symptoms to friends, family and colleagues and they may face disbelief or even discrimination from the community and workplace.
ME/CFS is a disease of the central nervous system and it’s not well understood. It has a wide symptom set and overlaps with many other diseases, which can make it difficult to diagnose. There is no laboratory test for ME/CFS, so doctors must assess and rule out other conditions based on symptoms. It can take years to get a diagnosis, and 90% of people with ME/CFS have never been properly diagnosed.
Research has shown that ME can be triggered by a number of factors, such as infections, hormonal imbalances, stress and genetics. Scientists are working hard to better understand ME through the world’s largest ME study, DecodeME. They are also developing potential treatments. However, it is currently a condition that affects everyone differently.
The illness can have a profound impact on a person’s life and can have long-term physical, emotional and psychological consequences. It can lead to problems at home and work, including difficulty accessing welfare benefits and social care support. There are also concerns about the effect on children, and Action for ME can help signpost parents to services.
ME can have a huge impact on a patient’s relationships with their friends and family and their workplace. The illness can make them feel isolated, causing feelings of frustration and anger. It can also have a negative effect on their self-esteem and confidence. This can lead to them feeling less able to speak up about their needs in healthcare settings.
It’s important to be able to find a healthcare professional who can help you manage your ME/CFS symptoms and who will listen to how the disease is affecting you and your quality of life. There are a number of organisations who provide information, support and advocacy to people with ME/CFS and their families. They can also help you find a doctor who understands ME/CFS.