The question of “who am I?” is a central one for everyone. The answers aren’t always easy, and they can be even more difficult when dealing with a chronic illness. It’s not just about the physical symptoms, but also the emotional and social effects. People with ME/CFS must often make major changes in their lives and find ways to cope with the extreme fatigue, sleep issues, pain, and other problems associated with the disease. In some cases, this means figuring out new parts of themselves they never knew existed.
ME/CFS is a chronic condition that is not curable, but treatments may help to reduce the severity of symptoms and improve quality of life. The illness is not caused by lack of exercise and is not a psychiatric disorder, contrary to popular belief. It is a neurological disease that affects the brain and nervous system. Research suggests that genetic, central nervous system, and immune factors are involved.
Some patients develop ME/CFS after a severe flu-like illness; others have developed it gradually over months or years. It is thought that certain infections – most commonly glandular fever, Epstein-Barr virus (EBV), herpes viruses such as HHV-6, HHV-8 and CMV, herpes B virus, enteroviruses, hepatitis A, hepatitis C, gastroenteritis, Ross River virus, and labyrinthitis – can trigger ME/CFS in some patients.
A diagnosis of ME/CFS requires that the person has experienced significant impairment in daily functioning, resulting in six months or more of fatigue, post-exertional malaise (PEM), unrefreshing sleep, and cognitive or orthostatic intolerance. The symptom pattern is relapsing, meaning that symptoms will improve and then worsen over time.
GPs can diagnose ME/CFS using history, physical examination, screening instruments, and diagnostic tests. It’s important to rule out other diseases that can cause similar symptoms, including depression and anxiety, and to identify overlapping features between ME/CFS and alternative conditions such as fibromyalgia, headaches, and sore throats. For example, while PEM is common in both ME/CFS and fibromyalgia, it is less intense in fibromyalgia and does not involve feelings of worthlessness or guilt.
People with ME/CFS should be referred to an ME/CFS specialist team to confirm the diagnosis and to develop a care and support plan. This should include medically trained healthcare professionals from a range of specialisms, such as rheumatology, rehabilitation medicine, endocrinology, infectious diseases, neurology, paediatrics and general practice, as well as clinical or counselling psychologists.
The ME/CFS specialist teams should also have expertise in delivering treatment and assessing the effectiveness of various approaches, such as graded exercise therapy, cognitive behaviour therapy, and pacing strategies. These should be based on the principle that it’s not about doing more, but rather reducing activity to what you can manage. Having this comprehensive assessment will also promote appropriate reimbursement by insurance groups, access to assistive devices and accommodation at work or school, and support applications for disability benefits. It will also help the patient to make informed decisions about their care and recovery goals. In addition, it will help clinicians to deliver high quality care for this complex and debilitating condition.