In an ideal world, people would get the support they need to live their lives to the fullest. But for many people with ME, their health problems have a profound impact on all aspects of their lives. They may become housebound or bedbound, and they struggle to access appropriate care and treatment.
ME (myalgic encephalomyelitis/chronic fatigue syndrome) can cause symptoms such as persistent tiredness, pain, sleep difficulties and difficulty thinking and concentrating, known as ‘brain fog’. The illness can have a very severe impact on a person’s life, and some have to limit their activities or stop working and schooling.
The exact cause of ME is unknown. However, it is thought that there are neurological and immunological elements to the condition. Research has also shown that certain infections, including but not limited to viruses, can trigger ME/CFS.
Despite the fact that ME/CFS is a very serious, chronic and debilitating disease, there is no cure or drug therapy available. Currently, ME is diagnosed by doctors based on the presence of one or more of the symptoms: significant impairment of daily functioning and activity that lasts six months or more, unrefreshing sleep, post-exertional malaise (PEM), cognitive dysfunction and orthostatic intolerance.
Research into ME has made good progress in recent years, but more funding is needed for the development of new diagnostic tools and effective treatments. Open Medicine Foundation’s guiding strategy focuses on open collaborative ME/CFS research to bring about precise diagnostic tests and life-changing treatments as soon as possible.
Campaigners are calling for a major reform of the NHS and wider public services to ensure that those with ME and illnesses like long Covid receive an accurate diagnosis and quality care. This would include ensuring that patients have local, clinically led ME services, and regional specialist centres for the most severe cases.
As well as ensuring patients can access an accurate diagnosis, campaigners are also calling for the NHS to offer more home visits for those with ME/CFS. This is so that they can have someone with them to help them manage their symptoms and support them when they are too tired or unable to move around.
The UK charity Action for ME says that there are up to 750,000 people living with ME in the country. They face “severe barriers” to getting the care they need, the organisation’s chief executive, Sonya Chowdhury, said this week. They are often overlooked, misdiagnosed and mistreated. Their quality of life is significantly worse than those with HIV/AIDS, heart disease, cancer or other diseases with similar levels of disability. They are also much more likely to experience depression, and have more psychiatric problems. Those with severe ME have a very high risk of suicide. The charity is urging GPs to ask for referrals for ME patients, as the number of diagnosed cases is much lower than the true figure. They are also calling on the government to invest more in ME research and services. This includes ensuring that ME/CFS experts are trained and supported, and that they are able to work with NHS teams to improve care for ME/CFS patients.