Myalgic Encephalomyelitis (M.E.) is an illness
that most of us have heard of but, despite the fact that there
are now thought to be over 170,000 sufferers in the U.K., very
few people really understand it. As a result, sufferers are often
left isolated and without the help and support that they need
from those around them, including their families, friends and,
for Christians, their fellow church members.
M.E. is basically a multi-system failure. Although primarily a neurological illness-it is listed by the World Health Organisation as such1-it also affects the immune system2 and muscles,3 and there is “evidence of significant damage to the skeletal or cardiac muscle as well as to other organs including the liver, pancreas, endocrine glands and lymphoid tissues”.4 The most obvious feature to outside observers is the profound exhaustion experienced by sufferers. The exhaustion is extreme: “The disabling weakness and exhaustion a patient with M.E. experiences is so profound that ‘fatigue’ is probably an insult”.5 International expert Daniel Peterson said about M.E., “In my experience it is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages”.6
When I suddenly became ill following a hepatitis B vaccination,7 as a previously fit-and-healthy 18 year old student nurse, M.E. was something that I had only vaguely heard of; I thought that it was “something to do with a virus”. When I first had the possibility of M.E. mentioned to me by a doctor, I started researching the illness, although it was 10 months before I obtained a firm diagnosis. I didn’t like what I read! M.E. is an illness that affects every aspect of life. The exhaustion is totally disabling, giving rise to a feeling of being poisoned. The muscle and joint pain is at times severe. The digestive problems-including an irritable bowel and food sensitivities-can make eating even a simple meal very difficult. Migraines can make listening to music or reading a book an impossibility. Constant dizziness and disequilibrium make moving around a real struggle. On top of all that, there is the uncertainty about the future. 80% of M.E. patients never recover.8
M.E. is an illness for which there is no known cure. Therefore it is, in most cases, up to the patients and their families to learn to live with and manage the condition. However there are things that do help. For example, rest and diet. Rest should be seen as a positive treatment, not as simply “giving up”; going on to the point of complete exhaustion could mean a relapse!9 Another area worth looking into is diet, as many sufferers find a change in their diet helpful. There are no hard and fast rules, but it a good idea to try to stick to a well-balanced healthy diet.
Having now been badly affected by M.E. for over 12 years, and having developed other problems-including digestive, thyroid and liver problems-on top of the illness, it has not always been easy to cope. I became a Christian at the age of 7 or 8, and had always thought that I was certain of what God wanted me to do: nurse training followed by some sort of missionary work. When M.E. hit me I was only 6 months into my training; as a result, my brief nursing career was brought to a rather abrupt end! Suddenly learning to cope with a much misunderstood illness and chronic ill health posed quite a challenge!
I soon found out that the “normal” things that we so often come to rely on-job, career, independence-are of no help when you have to spend most of the time lying in bed feeling awful and in pain! I also discovered that it can be hard, if not impossible, to find anyone who really understands the problems of M.E. However it is a great joy to know that, as a Christian, I have a Heavenly Father Who understands completely. He is sovereign, and it is an immense source of comfort to know that my life is in His hands.
The Bible does not promise us reasons for why things happen to us-but we are assured that, if we are Christians, all things are for God's glory and our ultimate good (see Romans 8 v 17 & 28). It can be very frustrating to see things that need to be done, and be unable to do them-particularly in the sphere of church and Christian activities. Yet God knows our individual circumstances and will not expect us to do what we cannot physically manage.
But this doesn't mean that our Christian lives are of no use. For example, learning to manage and live with a serious illness can be a witness to those around us, particularly non-Christians-as we do not live in our own strength but through "Christ Who strengthens me" (Philippians 4 v 13). J C Ryle commented that it is possible for those who are ill to "honour God as much by patient suffering as they can by active work. It often shows more grace to sit still than it does to go to and fro, and perform great exploits."
It is also good to remember that Christians who are living with a chronic illness are in the unique position of being able to help others (Christians and non-Christians) in similar situations: 2 Corinthians 1 v 3-4: "Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, Who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble (tribulation), with the comfort with which we ourselves are comforted by God.”
Of all the Christians that I have heard from over the years who suffer from M.E., I am sorry to say that I have yet to hear from one who gets the help and support they need from the church that they belong to, which is very sad. Fellow Christians can offer support in a number of ways-primarily through prayer, but also through learning about the illness, and keeping in touch by visits, letters, phone calls, emails, etc.
Over the years I have found the following comment by C H Spurgeon extremely helpful: "The God of providence has limited the time, manner, intensity, repetition and effects of all our sicknesses. The limit is also wisely adjusted to our strength-we cannot suffer too much or be relieved too late. The thought is full of consolation that He Who has fixed the bounds of our habitation has also fixed the bounds of our tribulation".
"There is comfort for the bereft soul, for the sore stricken spirit, and for those who in their bodies are bearing the burdens of weakness, and disease and suffering-the comfort that when Jesus comes we shall enter into the completeness of redemption won for us on Calvary." (J Russell Howden)
“Brethren, pray for us” (1 Thessalonians 5 v 25).
1 World Health Organisation reference ICD 10
2 A multi-centre study of autoimmunity in CFS. K Sugiura, D Buchwald, A Ko-maroff, E Tan et al AACFS # 037, Seattle, January 2001. Klimas, N G, et al Immunological abnormalities in chronic fatigue syndrome, Journal of Clinical Microbiology, 1990, 28, 1403-10.
3 Behan, W M H, et al Mitochondrial abnormalities in post-viral fatigue syndrome, Acta Neuropathologica, 1991, 83, 61-5. Jamal, G A and Hansen, S, Post-viral fatigue syndrome: evidence for underlying organic disturbance in the muscle fibre, European Neurology, 1989, 29, 273-6.
4 Richardson, John, Entroviral and Toxin Mediated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Other Organ Pathologies The Howath Press Inc. New York, 2001.
5 Cuozzo J, Chronic Fatigue, JAMA 1989:261:5:697.
6 Peterson, Daniel L, Introduction to Research and Clinical Conference. Journal of CFS 1995: 1:3-4:123-125.
7 Dr Charles Shepherd, Medical Director of the M.E. Association, has a particular interest in cases of the illness caused by vaccines; see p. 35-37 of Dr Shepherd's book “Living with M.E.” for further details.
8 Presentation to the Scottish Parliament on 4th April 2001 by Dr A Chaudhuri, Senior Clinical Lecturer in Neurology, University of Glasgow.
9 Lapp, C W, Exercise limits in the chronic fatigue syndrome, American Journal of Medicine, 1997, 103, 83-4. Sisto, S A, et al Metabolic and cardiovascular effects of a progressive exercise test in patients with chronic fatigue syndrome, American Journal of Medicine, 1996, 100, 634-40.