What is ME?

M.E. stands for Myalgic Encephalomyelitis. It is basically a multi-system failure, and has been classed by the World Health Organisation as a neurological condition since 1969 (reference ICD-10 G93.3). It brings with it a post exertional malaise, muscle pain and weakness, flu-like symptoms, digestive problems, exhaustion which is not alleviated by rest, as well as many other problems which can vary from person to person. It affects every system and part of the body, including the central and autonomic nervous systems, muscles, immune, endocrine and digestive systems; it can be fatal.

M.E. is sometimes known as P.V.F.S. (Post Viral Fatigue Syndrome), and in the United States is often called C.F.I.D.S. (Chronic Fatigue and Immune Dysfunction Syndrome). Many people now actually refer to the illness as C.F.S. – chronic fatigue syndrome – but this is unfortunate as, firstly, C.F.S. is really an “umbrella” term covering a number of fatigue syndromes and conditions. Secondly, the term C.F.S. does tend to trivialise the illness by giving the impression that fatigue is the only problem faced by those who have it, which is certainly not the case. After all, “fatigue” is a symptom, not an illness, and M.E. is most certainly not simply the “chronic fatigue” wrongly portrayed as M.E. by much of the media and, sadly, also the medical profession.

It is important to realise that M.E. should not be confused with a post-viral debility, which normally lasts for just a few weeks after a virus, but can leave a person feeling low for two or three months.

When I first became ill in February 1991, M.E. was something I’d only vaguely heard of – I knew that it was an illness, but my knowledge of it consisted of thinking that it was “something to do with a virus”! Due to the increase in awareness of the illness over the past few years, many people now at least recognise that M.E. is a serious illness, even if they know very little about it.

The cause of M.E. is largely unknown, although there are various theories. It does seem that there are some people who are more likely to develop the illness than others – particularly those aged 20-40 working in occupations where they are regularly exposed to a variety of viral infections e.g. health workers and teachers. More often than not the illness follows a virus, however, physical stresses such as infections, injuries, over-use of broad spectrum antibiotics, a bad diet, environmental pollution, vaccinations, pesticides, etc, do seem to play a part. Lessening exposure to these things could therefore in theory help lessen the chances of a person developing M.E.

Once a person has M.E. it is possible that there are certain factors which, if dealt with, could help to improve their condition e.g. endocrine problems, candida overgrowth, vitamin and mineral deficiencies and allergies and intolerances (the most common food intolerances being to dairy and gluten containing products).

Research has shown numerous physical biomedical abnormalities in people with M.E. including:

Immune System: chronic immune activation and dysfunction, evidence of persistent viral infection, low natural killer cells

Brain / Central Nervous System: objective measurement of dysfunction deficits in working memory, concentration, information processing, white and grey matter abnormalities, abnormal neuro-genetic expression

Endocrine System: impaired activation of the hypothalmic-pituitary-adeenal (HPA) axis, abnormalities of neuroendocrine-genetic expression

Muscular: structural and biochemical abnormalities including impaired muscle recovery after exercise

Heart and Circulatory System: hypoperfusion, impaired vascular control, low blood volume

Others: gastrointestinal dysfunction including food intolerance, mitochondrial dysfunction including abnormal mitochondrial associated gene expression

A diagnosis of M.E. is not normally considered unless activity levels are reduced by at least 50%. As there is not yet a test for M.E., it is usually made on the presence of certain symptoms, along with tests to exclude other possibilities, many of which have similar symptoms to M.E. (e.g. glandular fever, M.S., some cancers, other neurological conditions).

It is thought by some doctors that one of the main, underlying problems in M.E. is “metabolic dysfunction” i.e. hypo-thyroidism and hypo-adrenalism, with treatment aiming to remedy these deficiencies. For further details see the “What other help is available?” section.

The main diagnostic symptoms of M.E. are as follows:

1) Exhaustion and Post-Exertional Malaise – Exhaustion is a principal symptom of M.E., is experienced by all sufferers, and must not have previously been a problem. It is caused by trivially small exertion – physical or mental – compared to before the onset of the illness. Activity can put someone in bed for days or, if overdone, can cause a major relapse. It produces a post-exertional malaise, accompanied by muscle pain and weakness, that can begin soon after activity or be delayed by as much as 72 hours, which can make planning anything very difficult. The exhaustion in M.E. is severe, disabling, and totally unlike that experienced by healthy people. Some have described it as being totally drained of energy and “having their plug pulled out”. Unlike normal tiredness it is not helped by exercise and would be made worse by it.

2) Neurological/Cognitive Problems – such as impairment of concentration and short-term memory; mixing-up of words; difficulty processing information; disturbed, unrefreshing sleep, with a lack of normal, restorative sleep; balance problems; sensory disturbances (e.g. hypersensitivity to light and sound); emotional lability.

3) Unpredictable Fluctuation Of Symptoms – from day to day, or within a day. This can mean not feeling tired all the time, but it is common to feel ill all the time! Symptoms can be exacerbated by doing too much and not managing the condition properly.

Other symptoms include: muscle pain (which can be severe) and muscle weakness; multi-joint pain, normally without swelling; clinical/laboratory evidence of viral infection, with sore throats and painful lymph nodes; poor temperature control i.e. sweating or shivering; altered sleep patterns; chest pain (which should be investigated if frequent and/or severe); abnormalities to the heart rate and rhythm, including palpitations; visual disturbances; problems with digestion similar to Irritable Bowel Syndrome; mood swings; severe migraine-type headaches; and generally feeling unwell.

Depression can occur in those with M.E., but is an effect of the illness and not the cause. The percentage of those with M.E. who are diagnosed with clinical depression (as opposed to just feeling “fed-up”) is no different than what would be expected in any chronic illness e.g. as in M.S.

These symptoms could, of course, be caused by a number of illnesses, and therefore only help to confirm the diagnosis when the main diagnostic symptoms are all present.

M.E. usually has a sudden onset following a viral illness (e.g. flu, gastroenteritis), but it can also follow the use of pesticides/organo-phosphates or a vaccination – as in my case, where my illness was started by a Hepatitis B vaccination which I was required to have as a student nurse. Needless to say, the sudden onset of M.E. brought my brief nursing career to an abrupt end!

At best people with M.E. manage to work, even if they have to spend every evening and weekend resting. Some, however, are confined to house, or even to bed; while others are somewhere in the middle – not housebound, yet unable to work. M.E. often lasts for years, and as yet there is no known cure.

It is thought that about 75% of people diagnosed with M.E. improve to some degree in time; however the percentage of those with severe M.E. who recover is very low, at probably less than 5%. Overall, many improve up to a certain point, but never regain full health and have to live within certain limits – such as sticking to particular diets, working on a part-time basis (if at all) and carefully pacing themselves. Unfortunately the other 25% may become permanently disabled by their condition and find themselves very dependent on others in order to manage from day to day. At its very worst M.E. can be fatal; it seems likely that this is most often associated with the development of heart problems.

Those who make the best progress tend to be those who get an early diagnosis and so learn to manage the illness properly, with the help and support of their G.P., family and friends. Children especially do tend to make good recoveries, even if severely affected for a number of years.

Unfortunately for some it can take months or even years to obtain a firm diagnosis. During the intervening time they push themselves too hard – possibly resulting in long-term damage which could have been avoided with early diagnosis and correct advice.

Although there are certain symptoms common to all M.E. sufferers, M.E. is a very individual illness, with different people experiencing different problems. Just because some people are severely affected by M.E. for many years doesn’t mean that you will be – there are things that you can do which will help you to manage your condition. Remember, even if you have been ill for years, don’t give up. It is never too late to start learning about the illness, and it is possible to make progress even after many years.

Most people with M.E. find that there are certain things that cause their symptoms to worsen, resulting in a relapse in their condition e.g. exercise, further infections, anaesthetics, antibiotics, vaccinations, pesticides and alcohol.

One of the characteristics of M.E. is its fluctuating nature, with patterns of good and bad stages. Those with M.E. often find that they are turned from active, independent people into those who are dependent on others, unable to live their lives as they did before the onset of their illness. This on its own can cause a loss of self-confidence – and friends and relatives of those with M.E. should, where possible, give help and encouragement to boost the confidence of the sufferer. However, compared with those who suffer from depressive illness, people with M.E. tend to retain good motivation and appreciation of life.

A word of caution: M.E. is normally an “unseen” illness, and in my experience this means that it is virtually impossible for people in general to understand and appreciate the impact and seriousness of the condition – unless they have either had it themselves or have a very close friend / relative with it. Trying to explain the crippling exhaustion and severe pain is extremely difficult – in fact, most people seem surprised to know that pain is involved at all, as M.E. is thought by many to consist purely of “fatigue”!

As a result, I don’t think that it is worth spending a great deal of time and energy trying to get people to understand the illness – as on the whole, they won’t! By all means encourage the people you know to read up on M.E. – but don’t expect too much. I am always happy to give information about the illness to anyone who is interested enough to ask for it, but other than that I feel that it is best to accept that it is a condition which is difficult enough to understand by those of us with it, and therefore almost impossible for those with no personal experience of it

However, whilst from a human point of view it can be very difficult to find anyone who understands the problems of M.E., as a Christian I know that I have a Father in Heaven Who understands completely – God knows exactly what we are going through! He is sovereign, and it is a great source of joy and comfort to know that my life is in His hands – and of course, this is true for all who are Christians, who know Jesus Christ as their Saviour and Lord.

Also, we know from the Bible that during His time on earth the Lord Jesus knew what it was like to feel pain, to feel weak and tired. We are told in Hebrews 4v15 that “we have not an high priest which cannot be touched with the feeling of our infirmities; but was in all points tempted like as we are, yet without sin.” Surely this is another source of immense comfort to us, and means that we can “come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need” (Heb 4v16) – whatever our circumstances may be! What a privilege! “The LORD is my portion, saith my soul; therefore will I hope in Him” (Lamentations 3v24).

What can I do about ME?

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