Often when people are asked to describe themselves, they have trouble finding one word. This is especially true if they have ME or other chronic illness that affects their cognitive function, such as autism and depression. But finding the right answer to this question is a crucial step in figuring out who you really are. The right words can help you make good decisions about your life, and the best way to find the right word is to think about what is most important in your life.
Myalgic encephalomyelitis (ME) is also known as CFS, ME/CFS or Post-Viral Fatigue Syndrome (PVFS). It is a complex, neuroimmune disease that impacts multiple body systems. People with ME experience a significant loss of physical and cognitive function, with many reporting being more disabled than people with conditions such as MS, stroke, diabetes, heart failure, cancer or renal disease.
ME can be triggered by certain infections and is thought to be hereditary. A number of viruses have been linked with ME including glandular fever, Epstein-Barr virus (EBV), herpes simplex, herpes zoster (causing shingles) and, in Australia, Ross River virus.
There are no laboratory tests to diagnose ME directly, but evidence suggests that patients with ME have consistent biological abnormalities. ME/CFS is diagnosed based on in-depth evaluation of symptoms and exclusion of other conditions that could cause similar symptoms. The most recent diagnostic criteria for ME include post-exertional malaise, a flare or worsening of symptoms after exertion, typically within 24 hours.
While there is no definitive treatment for ME, some treatments have been shown to help in specific groups of people. These include pacing, which means matching activity levels to limited amounts of energy; sleep aids; anti-depressants; pain medications and, in some cases, symptomatic treatments for other disorders that may be causing problems such as thyroid dysfunction, gastroenteritis, inflammatory bowel disease and anxiety or depression.
It is important that ME and other chronic illnesses are properly assessed and treated. If you are experiencing severe symptoms, we strongly recommend that you speak to your GP and ask for a referral to an ME specialist team. This should have medically trained clinicians from a range of specialisms, such as rheumatology, rehabilitation medicine, endocrinology, infectious diseases, general practice and neurology. A multidisciplinary approach will enable the team to develop a care and support plan tailored to the individual’s needs. The ME Association is committed to working with the NHS to ensure that the new clinical guidelines for ME/CFS are implemented effectively and people get the care and support they need. The ME Association has published a clinical guideline for health professionals and a booklet that explains what people with ME/CFS should expect from the NHS and local services. You can access these free of charge here.