The history of ME/CFS

Contrary to belief, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome are not new and rare diseases but have actually been around for centuries with the first recorded case in the American Civil War of 1871.

Since 1934 there has been over 60 recorded epidemic outbreaks worldwide and although many people are unaware of ME/CFS this does not mean it is uncommon.  A study from Liverpool University confirmed that there are half a million ME sufferers in the UK alone.

The best known UK outbreak of ME is known as the Royal Free epidemic. During the late spring of 1955 the Royal Free hospital admitted a number of people with unusual symptoms, further events at the hospital unfolded when almost 300 members of staff became ill and hospitalised. The hospital was then forced to close.  It was this outbreak where the term Myalgic Encephalomyelitis was defined. Myalgic Encephalomyelitis describes the effects on the muscles, brain and nerves and is regarded as the best clinical description for the illness.

If in doubt, change the name

This disease has confused doctors since the first recorded instances and has been dubbed “The Disease of a Thousand Names” (David S. Bell, MD, Lyndonville, Pollard Publications, 1991). This was to highlight the huge number of names used to describe the illness. These names include:

  • Akureyri Disease
  • Benign Myalgic Encephalomyelitis
  • Chronic Exertional Intolerance Disease
  • Chronic Fatigue Syndrome
  • Chronic Fatigue Immune Dysfunction Syndrome
  • Chronic Infectious Mononucleosis
  • Chronic Immunological and Neurological Disease
  • Epidemic Myalgic Encephalomyelitis
  • Epidemic Neuromyasthenia
  • Functional Neurological Disorder
  • Functional Immunelogical & Neurological Disorder
  • Iceland Disease
  • Myalgic Encephalitis
  • Myalgic Encephalopathy
  • Neurasthenia
  • Post-Viral Fatigue Syndrome
  • Raphe Nucleus Encephalopathy
  • Royal Free Disease
  • Tapanui Flu
  • Yuppie Flu (slang)

With so many names it is not surprising that sufferers and the general public are confused to what this disease actually is.

Why doctors know so little about Functional Neurological Disorder & Myalgic Encephalomyelitis

You would think that a disease that has been around for so long and that affects so many people would have been studied exhaustively and that doctors would have a wealth of information, answers and treatments. However, this is far from the truth. ME/CFS are very complex illnesses which have alluded doctors for decades and many patients have initially been misdiagnosed or abandoned due to lack of knowledge and research.

At the moment, biomedical research into ME is limited in the UK.

However, other parts of the world have invested in biomedical research and using the latest medical technology and new scanning techniques have found distinct biological differences between ME/CFS sufferers and healthy subjects. Metabioligists have now identified the disease at a cellular level and scientists in Australia have made a world breakthrough proving that ME/CFS is a disease and not a psychological issue. This is fantastic news for FiND ME patients and scientists believe this is just the beginning and that a blood test to identify ME is round the corner.

For references and citations please click here.