What are ME/CFS/PVFS/FMS?
ME/CFS/PVFS/FMS are debilitating illnesses for which the causes are not yet understood. However, there is often a trigger leading to the onset of illness; this might be a virus such as influenza, glandular fever, hepatitis or tonsillitis. Less frequently, the triggering factor may be vaccinations, working with pesticides, anaesthetics or major stress. In some people no trigger can be readily identified. The primary symptoms are chronic fatigue, disturbed sleep patterns, waking from sleep feeling unrefreshed, muscle pain and stiffness, and problems with concentration and short-term memory. Many people with these illnesses also experience other symptoms, such as food allergies/intolerances, eye problems and digestive problems, which vary widely from person to person. According to the National Taskforce on NHS Services, these illnesses cost the nation about £1 billion annually.
How many people are affected by these conditions?
Current research suggests that, in the UK alone, there are 150,000 people suffering from ME. It can affect people of any age but the onset is unlikely to occur before the age of 7 or later than the age of 60. For children it can mean the loss of many weeks of schooling and no qualifications. The average GP may have no more than 4 or 5 patients on his list with the symptoms, so it is not surprising (sadly) that many GPs have little experience of what to do. Similarly, there are few NHS consultants nationally.
Is there a cure?
There are literally hundreds of studies being conducted world-wide but, unfortunately, so far no one has discovered a definitive ‘cure’. Some people continue to suffer for the rest of their lives. Others seem to recover fully after a few years. The majority of people, however, will have remissions and relapses over a number of years. Sometimes they will feel well and other times very ill, even fluctuating on a daily basis. Whilst there is no cure, there is increasing evidence that suggests ME can be managed; this may call for an entire change of life style. Sufferers must slow down, avoid all stress and learn to “listen” to their bodies. Individuals will learn, for example, what is to be avoided, and when and how often to rest. Some people continue to manage full-time work; but the majority have to reduce their working hours or give up work entirely.
Can anything be done?
The short answer is “yes”. Sufferers need support from carers and each other, and information to discover how best to manage the illness. Sufferers can also be helped with good access to information and practical aid. All of us will benefit by demanding and supporting more research into causes, cures and treatments.