Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) affects a broad range of people and can be disabling. The disease is a chronic condition that impacts on physical, mental and emotional wellbeing. Symptoms can be debilitating and leave patients feeling exhausted and unable to work or study.
Symptoms can vary from person to person and can change over time. Some people develop ME/CFS suddenly while others have been ill with it for months or years without realising it. ME/CFS is a complex, multi-system illness involving the central nervous system, immune system, and metabolic systems in the body. Scientists are still trying to piece together a full understanding of the causes and effects of ME/CFS, but in the meantime, Solve ME is supporting research on diagnosis and treatment so that people with this condition can receive life-changing treatments as soon as possible.
Diagnosis
A diagnosis of ME/CFS is made after a medical assessment and by ruling out any other diseases that cause similar symptoms. This is based on your medical history and pattern of symptoms, including the cardinal symptom of post-exertional malaise, or PEM. The condition can have a number of different causes, but the most common is a viral infection.
The main symptoms of ME/CFS are extreme tiredness, sore muscles and joint pain, sleep problems and headaches. Many people also experience depression, anxiety and low mood, although this is not always the case.
Pacing is the most effective way to manage the symptoms of ME/CFS, and involves matching your level of activity to your energy levels. It can help you to avoid crashes and minimise the severity of your symptoms.
Medications are not usually used to treat ME/CFS as there is currently no cure, but anti-inflammatory medications and muscle relaxants can help with pain, swelling and other associated symptoms. It is important to take your medication as prescribed, and to start with a lower dose to reduce side effects.
Clinical guidelines and advice
The NICE clinical guideline on ME/CFS outlines the symptoms, diagnosis and management of this condition. The guideline has been produced to support patients, carers and healthcare professionals. It is a free resource available to download from this website.
Specialist teams:
It is important to refer adults with suspected ME/CFS to a specialist team to confirm their diagnosis and develop a care and support plan. This should consist of a group of medically trained clinicians from a variety of specialisms as well as access to other healthcare professionals who have experience of treating ME/CFS.
They should complete a comprehensive, holistic assessment and consider the person with ME/CFS’s medical, social, educational, and occupational needs. They should then develop a personalised care and support plan to meet their needs.
Specialist services should provide a full range of diagnostic tests and laboratory investigations to aid the diagnosis process. They should also have access to a wide range of specialist care services, such as physiotherapy, occupational therapy and dietitians.
It is also important to be referred to an ME/CFS specialist team if your symptoms have worsened. These specialist teams are likely to have a greater knowledge and expertise of the disease than generalists. They will be able to help you to apply for disability benefits, get wheelchairs or other equipment, and get adapted work or study spaces. They should also be able to recommend suitable support networks or carer groups.