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ME/CFS is a long term – frequently life long – debilitating illness. So what does ME/CFS stand for? Myalgic Encephalopathy (previously encephalomyelitis) or Chronic Fatigue Syndrome. With a full name like this, one can see why it is abbreviated to ME/CFS.
It is an illness that affects the neurological, immune and endocrine systems. It is therefore a physiological illness (we emphasise this) as ruled a number of years ago by the United Nations health authorities, contrary to the previously long held view that it was a “state of mind” illness which was much to the detriment of people with ME.
The “myalgic” part of the name refers to pain which a majority of people with ME suffer. We sometimes read of a child having a neurological defect where they do not feel pain, putting them at risk when they become injured but a lack of pain does not tell them this. With ME/CFS, it is the opposite – muscular, bone and skin pain, quite severely at times, exists without any apparent physical cause. ME/CFS symptoms include extreme exhaustion, post-exercise fatigue with other systems including poor concentration and short term memory, sleep disorders, headaches, sore throat and swollen glands, gastrointestinal problems (e.g. irritable bowel syndrome) and temperature irregularities. Depression often occurs, but it is as a consequence of the illness rather than the cause.
An associated illness is Fibro-Myalgia (FM). People with FM have pain without any apparent physical cause i.e. injury, as their prominent symptom. They can also have a number of ME/CFS symptoms but they are of a lesser degree than the FM aspect.
Currently, there are no standardised tests available in New Zealand to enable the diagnosis of ME/CFS. Doctors must rely on the ability of their client to properly describe their symptoms and it is the presence of a number of these and that they have been present for no less than six months that enables a doctor to diagnose ME/CFS. The problem with this is that early intervention can be of help to the client and help reduce the extent of the illness.
New Zealand does not have statistics on the incidence of ME/CFS so we must rely on those from overseas, primarily from the United Kingdom and United States. These show that about 2 to 4 people in every 1,000 people will develop ME/CFS at some time of their life. Only about 1 in 8 will effect a full recovery, being mainly those whose illness developed during their teens. They are also frequently the most ill during the acute stage of the illness being bed-ridden, ultra-sensitive to light, extreme myalgia etc, and have a recovery period of about five years. Of the remaining 7 people, 2 will remain severely affected for the rest of their lives. The remaining 5 will recover to varying degrees but not back to full health and will be prone to recurring bouts of the illness.
Earlier medical research into ME/CFS was identifying various causes for symptoms. For instance, research utilising brain scans showed a deterioration and reduction in the volume of brain mass in people with ME/CFS, while various parts of the brain did not activate in an expected way to stimulants and exercises. It is however the mapping of the human genome that is providing the greatest progress. The research of Dr Jonathon Kerr of St George’s University of London is among the foremost. Our genetic code has a vast number of characters. Dr Kerr’s research by 2006 had identified 35 genetic codes (defects) present in people with ME/CFS that were not present in healthy people. As of 2008, this has increased to 88. This is the strongest evident to date that ME/CFS is physiological, and not psychological, in nature. The aim of Dr Kerr’s research is firstly to develop a simple blood test for ME/CFS enabling early diagnosis and intervention, followed by a form of treatment that will reverse the effects of this illness.
Because a person has these genetic variations does not mean they have ME/CFS, but that they could be prone to it. ME/CFS particularly affects “driven” people – career people who consistently apply themselves to a far higher degree than the average person. This places pressures upon their systems. The most common form of onset is a particularly nasty virus from which the person never fully recovers. Research has shown that the immune system that activates when a virus arises remains overactive instead of switching off once the virus is overcome.
Japan has now entered the ME/CFS research field in a big way. We have long heard of the pressure that is on a Japanese student to succeed and their hard working mentality. It has been shown that the prevalence of ME/CFS in Japan is alarmingly increasing, resulting in huge economic waste. Not only is there the loss of that person’s input into the economy, but there is also the long term cost of supporting them during their illness. The Japanese government has therefore committed four billions dollars to ME/CFS research and it may be that this is where the answers will come from. It is early days yet, but we are already seeing treatment coming out of Japan which, while not providing a cure, is providing an improvement for some people with ME.
Florence Nightingale of Crimean War and subsequent nursing fame and history was largely bedridden during about the last 15 years of her life. ME/CFS was not known then. However, her symptomology is strongly indicative that she had ME/CFS. It is for this reason that ME/CFS International Awareness Day is celebrated on her birth date of 12 May. Interestingly, in considering her subsequent illness and past career, there have been outbreaks of the illness among hospital staff, one of the more well known being that of the Royal Free Hospital in London where a large number of medical staff developed ME/CFS.
ME/CFS Support Group (BoP) Inc is a registered charitable society that operates in the Western and Eastern Bay of Plenty. It has offices in Tauranga and field officers based in Tauranga and Whakatane. It is not a nursing service, but offers information, advice and resources to enable people with ME/CFS, their carers and family/whanau to better understand this illness and thereby better manage their lives as affected by it. Membership is free.
Every two years, the Group organises a free public seminar on ME Awareness. The keynote speaker is usually Dr Ros Vallings, NZ’s foremost medical expert on ME/CFS. Ros was recognised in the 2008 NZ New Year Honours List for her services to ME/CFS. She attends many overseas conferences and brings us up to date on current world research, diagnosis and treatment of this illness.
For more information about the Group, contact the Group’s office at Tauranga 07 578-7804, or their Whakatane field officer at Whakatane 07 308-0322.
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