M.E. – Myalgic Encephalomyelitis

It’s not easy to explain exactly what Myalgic Encephalomyelitis – ME for short – is. In some countries the illness goes under the name CFS – Chronic Fatigue Syndrome. Because ME is such a complex and difficult illness to explain, I’ve chosen to use a brilliant fact sheet from the UK ME Association as source. The first page is to read here, the entire fact sheet can be downloaded here on the official website.

ME Association Factsheet

What you need to know about M.E.

M.E. (myalgic encephalopathy or encephalomyelitis) is a complex multisystem disease with a wide range of disabling symptoms.

  • 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.

 

If you want to read about it in Danish, here is a link to the Danish ME Association

It’s a very controversial illness and in many countries it is more seen as a psychiatric illness. In Denmark in particular, we are fighting with the Danish Health Authorities and their new recommendations of treatment and definition. ME (and other illnesses like e.g. fibromyalgia and whiplash) are to be seen and treated as ‘Functional Disorders’. The material published in June 2018 from the Danish Health Authorities – SST – are not published in English, but to read what it’s all about, please look here. This piece is written by the chairman of the Danish ME Association.

I must warn, it’s all very political in many countries, incl. the US, UK and many European countries. Even us sick with ME really don’t understand what is going on, all we know is, that we are NOT getting the right treatment and that there’s next to nothing government fundet research going on in the majorities of the countries around the world.