ME/CFS affects people of all ages and both genders. It can appear suddenly or slowly over time and can be triggered by many different events, most commonly viral infections. There is no test for ME/CFS, but it can be diagnosed based on medical history and after other possible causes of symptoms have been excluded.
The illness can be debilitating and can make it difficult to live independently. It’s also misunderstood, which can lead to disbelief and even discrimination from family, friends, healthcare professionals and employers.
This can be especially distressing for people with severe ME/CFS who have a more limited physical capacity and are often dependent on others for help with basic tasks. Despite this, ME/CFS patients do not want to be seen as “lazy” or “weak.” They simply seek to maintain their quality of life and find ways to manage their condition as best they can.
Symptoms of ME/CFS include severe fatigue, post-exertional malaise (PEM), cognitive impairment, low resilience and a complex clinical picture including problems with the autonomic nervous system and immune system. People with ME/CFS often have to reduce their working hours, resulting in a loss of income and social isolation.
ME/CFS is a complex illness with no specific treatment or cure. However, some symptoms can be managed by pacing activities and reducing stress levels. For some, dietary and sleep changes can also help. The illness can be triggered by a wide range of events, including physical, psychological and emotional stresses, viral infections and environmental factors.
In the UK, it’s estimated that around 250,000 people are living with ME/CFS. Campaigners are calling for reforms to NHS care, such as adding local specialist ME/CFS services, and more support for people who have the most severe symptoms.
The goal of MEAction is to grow and mobilize a community of patients fighting for health equality for ME/CFS. They want to accelerate the discovery of safe and effective treatments, work to increase funding for ME/CFS research, and promote awareness about this invisible illness.
MEAction is a 501(c)3 founded in 1985 to meet the needs of people with CFIDS/ME, ME/CFS and FM (fibromyalgia). They provide information, education, advocacy, support groups, & a range of other services for those suffering from these conditions. Their website includes a comprehensive list of resources and helpful guides to managing ME/CFS. They also have a blog with tips for navigating the workplace and a wiki on how to cope with ME/CFS. They also offer a variety of volunteer opportunities to help spread the word about ME/CFS and encourage patients to get involved in their advocacy efforts.