The ME Association has published an updated and comprehensive booklet on everything you need to know about ME/CFS. Written by Dr Katrina Pears, Research Coordinator for The ME Association, it covers many important areas and provides expert information for people with ME/CFS.
Introduction
This booklet provides a summary of what you need to know about ME/CFS and is based on the evidence-based NICE Guideline, expert medical opinion, and the result of medical research.
It considers key symptoms, diagnosis, multidisciplinary care, what might cause the disease, predisposing, precipitating and perpetuating factors, and explains what the research has been telling us about the underlying disease process.
- ME/CFS is a complex, chronic medical condition affecting multiple body systems and its pathophysiology is still being investigated.
- It can cause many different symptoms, which can be triggered or worsened by any kind of effort or activity.
- It affects everyone differently and its impact varies widely – for some people symptoms still allow them to carry out some activities, whereas for others they cause substantial incapacity.
- It is a fluctuating condition in which a person’s symptoms can change unpredictably in nature and severity over a day, week or longer.
- It can affect different aspects of the lives of both people with ME/CFS and their families and carers, including activities of daily living, family life, social life, emotional wellbeing, work and education.
- People with ME/CFS may have experienced prejudice and disbelief and could feel stigmatised by others (including family, friends, health and social care professionals, and teachers) who do not understand their illness.
- Because it can look like many other illnesses, people often face uncertainty and delays in diagnosis.
- Symptoms include flu-like malaise, sleep difficulties, brain fog and a debilitating fatigue that is unlike normal tiredness.
- People may also experience chronic pain, headaches, nausea, digestive problems, and sensitivity to light, sound and other stimuli.
- Symptoms often fluctuate in both nature and severity, causing distress and disrupting people’s lives.
- There are options that can help people manage their ME/CFS, but a therapy that helps one person may cause harm to another, so a carefully tailored plan and specialist advice is always needed.
