Myalgic Encephalomyelitis – An Under-Recognised Disease
Written by Lily Hampton, KwikMed.org
This article is about one of a number of diseases that are all too frequently not properly diagnosed or correctly treated.
Myalgic Encephalomyelitis, more commonly known as ME or CFS (Chronic Fatigue Syndrome) is an extremely debilitating illness that is difficult to diagnose and has no known single cause. Sufferers not only have to adjust to the life altering effects of the illness, but, also to other people’s perceptions of them as sufferers.
History of the illness
ME/CFS is often considered to be a new illness that first came to light in the 1980’s. However, there have been recorded cases of illnesses presenting a similar range of symptoms from as far back as 1750. It is also possible that well known figures such as Charles Darwin and Florence Nightingale may have suffered from similar illnesses.
In 1809, an American psychiatrist George Beard recorded symptoms of an illness that he named ‘Neurasthenia’. The illness, which he found to be most common in young women, again had symptoms similar to those experienced by people who suffer with ME/CFS.
There were further outbreaks recorded in both America and the UK. In 1934, around 200 staff at the Los Angeles County General Hospital became ill with ME / CFS type symptoms, and over half of them were still unable to work six months later. A similar outbreak at London’s Royal Free Hospital in 1955 caused the hospitalization of 255 members of its staff.
Symptoms and Causes
Diagnosing ME/CFS relies heavily on the medical practitioner being able to take a full and accurate history of the patient’s symptoms, and on them being able to rule out other conditions being masked by the symptoms. Diagnosis is made more difficult by the fact that no two sufferers exhibit exactly the same type or gravity of symptoms. It is now generally understood that a patient thought to be suffering from ME/CFS will exhibit the majority of the following symptoms for a period of at least six months:
- Fatigue – physical and mental
- Post-exercise malaise
- Disturbed or unrefreshing sleep
- Pains – especially in the muscles and joints, but, often also involving severe and long lasting headaches
- Short term memory loss, sensitivity to light and/or sound, feelings of disorientation and sensory disturbance
- Problems with the bladder and/or bowel
- Changes in eating patterns
- Reoccurring flu like symptoms
There is little understanding of what causes the onset of symptoms. In many cases, the symptoms become apparent after an illness, bereavement or period of extreme stress. The onset has also been linked to glandular fever, inoculations, anemia, and life style issues. Research is also being undertaken in the possible role played by HHV – 6 (Human Herpes Virus Type 6).
The Impact of ME/CFS
ME/CFS is most commonly diagnosed in middle aged adults, but it can affect people of all ages, including children and adolescents. There is a much higher proportion of female sufferers, with only 30 % of those diagnosed patients being male.
The last estimated cost to the American economy was $22 - $ 28.6 billion a year. This figure only takes into account fully diagnosed cases, and with an estimated full recovery rate of just 5 % to 10 % of cases, it is likely to continue to have a major impact on the economy. Figures in the UK suggest that up to 25% of sufferers remain severely disabled, with many continuing to be house bound. For those who fall into the other 75%, there are varying degrees of recovery, interspersed with period of relapse and difficult choices to make in order to try and maintain a work/life balance.
Why Is it Still an Under Recognized Disease
There are several reasons for this, and many are related to the difficulty of diagnosis, and the fact that it is often misdiagnosed. Many sufferers are told it is all in their head or given prescriptions for depression, while others are still told: ‘Rest and it will get better’.
In some cases, it is due to the attitude of the medical professional and their refusal to recognize the signs and symptoms as belonging to one single illness. In Florida, only 18 doctors are included on the ‘good doctors list’ as doctors who openly recognize, treat, and respect patients with ME/CFS; there are only seven on the list for the whole of the UK.
The cause of patients with ME/CFS was not made any easier when the illness was termed ‘yuppie flu’ in the 1980’s after a large number of active, young professionals were taken ill. Their symptoms were seen as the result of their over indulgent lifestyle, and other sufferers were assumed to be either copying or to be responsible for their own ill health.
The future is positive and increasingly bright for sufferers, however; there are several large and increasingly influential patient support groups working in American, Canada, and the UK, and a few that work internationally, to increase the profile and awareness of the illness, fund research into cures, and provide much needed support to sufferers and their families. For more information on unrecognized medical conditions, you can visit http://www.kwikmed.org/medical-conditions-struggling-recognition/.