Trying to find clear information on M.E. (myalgic encephalomyelitis) can be pretty tricky. There are many different opinions about what it is, who has it, what causes it and how (or if) it can be treated. It is also often referred to as CFS (chronic fatigue syndrome), though not everyone agrees that the two terms should be interchangeable.
According to the ME Association’s fact sheet:

  • M.E. is classified by the World Health Organisation (WHO) as a neurological disease. WHO classification is recognised by the Department of Health, the Medical Research Council and NICE (National Institute for Health and Care Excellence).
  • M.E. is estimated to affect around 0.2-0.4% of the population (c.250,000 people in the UK) – including children and adolescents.
  • M.E. affects all social classes and ethnic groups.
  • M.E. is the commonest cause of long term sickness absence from school.
  • M.E. can affect more than one family member – suggesting that genetic factors may be involved in predisposing people to develop the disease when a triggering event occurs.
  • M.E. has been estimated to cost the UK economy £3.3bn each year (see page 2).
  • M.E. can cause greater functional impairment than many other serious medical conditions, including multiple sclerosis and cancer.
  • M.E. is a devastating disease with no established biomarker. Significant abnormalities in the central nervous system, immune system, endocrine (hormone producing) system, and in muscle (causing energy metabolism impairment), have all been found to be involved in the disease process.
  • M.E. is not a minor ailment and there is a wide spectrum of severity. Around 25% of people are severely affected – being house-bound, or bed-bound and often requiring a wheelchair if they can mobilise – at various stages during the illness.
  • M.E. can affect some people very severely, leading to atypical seizures, speech and swallowing difficulties and extreme intolerance to light and sound. These people will be bedbound, require continuous 24-hour care and may require tube-feeding.
  • M.E. in most cases can be linked to a previous viral infection – from which people do not seem to have recovered. In some cases, M.E. can follow a vaccination, or other known triggering event.
  • M.E. is generally regarded as a fluctuating condition – meaning that the symptoms can vary in form and intensity throughout the day, from day to day, and week to week – making it very unpredictable.
  • M.E. is diagnosed following careful assessment of clinical history, physical examination, exclusion of other possible causes of symptoms and the application of diagnostic criteria. There are currently no blood or other diagnostic tests available.
  • M.E. has a unique and defining clinical feature known as post-exertional malaise – a delayed exacerbation of symptoms that can follow even minor physical or mental exertion.

During M.E. Week (7th-13th May 2018), the M.E. Association will be focussing on the impact that the condition can have on work and education, including:

  • the struggle to hold down a job,
  • the fear of losing a job and facing an uncertain future reliant on benefits,
  • the effect that giving up a career and the loss of employment can have,
  • the uncertainty of life on benefits,
  • the loss of education,
  • the difficulties encountered when trying to continue in education,
  • the successes and disappointments that studying can bring.