Early diagnosis and management of M.E. are probably the two most important things for anyone with the condition, so therefore if you have (or if you think you have) got M.E., then the first thing to do is to get an early diagnosis. This is necessary so that you can learn as much as possible about the illness and how to manage it – but sadly, it is often easier said than done. You will need to find a GP who is sympathetic and who has some knowledge and experience of helping those with M.E.
If your G.P. does not want to help, then it would be worth changing to one who does. You will be able to find out about sympathetic G.P.s in your area from other M.E. sufferers and local support groups, which may have lists of consultants and G.P.s that have been recommended by others with the illness. If your G.P. is not helpful, or not very knowledgeable about M.E., you could try giving him some information about the condition. Although your GP probably won’t know a lot about M.E., he can refer you to a specialist who will be able to confirm your diagnosis and give you further advice.
Unfortunately, due to a lack of understanding of M.E., you might well be advised to undergo various treatments/therapies that could not only be unhelpful, but could actually make your condition worse e.g. Graded Exercise Therapy (G.E.T.) and Cognitive Behavioural Therapy (C.B.T.). In a survery carried out in 2004 by the 25% M.E. Group, a group for the 25% of M.E. sufferers who are severely affected by the illness, 93% of sufferers found C.B.T. to be unhelpful, with 95% finding G.E.T. unhelpful. Worryingly, of those who tried G.E.T., 82% reported that they were worse afterwards.
The best person who can help you is yourself! It is a good idea to find out everything you can about M.E. – read books, magazines, leaflets. Although there is no cure for M.E. there are things that you can do that will help. You should also encourage family and friends to read up on M.E. as well, so that they can appreciate your problems more fully.
1) Rest – there are many so-called “treatments” for M.E., some of which can be helpful, but the only one generally agreed on is rest. Rest, especially in the early stages of the illness or during a relapse, increases the chances of recovery as well as the recovery rate. Rest should be seen as a positive treatment for M.E., not as just “giving up”. As soon as you start to feel tired – mentally or physically – you should stop what you are doing. Going on to the point of exhaustion could mean taking weeks or months getting over a relapse, rather than hours or days.
Some people (especially doctors) feel that too much rest can lead to muscle wasting. Whilst it is true that as a result of resting muscles can become weak, there is no evidence of actual wasting. Most people with M.E. are able to keep up at least some movement around the house, or even take short walks. However, if completely bed-bound, some gentle, passive physiotherapy may be helpful – as long as the physiotherapist (or whoever carries it out) is sympathetic to the situation and has some understanding of the illness.
Having M.E. may well mean reorganizing your life and putting certain things “on hold”. It is very hard for most people to let go of things that they have been doing for years e.g. careers, hobbies, church activities, etc – but it is the only way to manage the illness. You have to learn to say “No”!
It is a good idea to try and establish a daily routine – if you are at your best in the morning, then that is the time to carry out daily activities. If your best time is in the evening, then there is little point trying to work in the morning!
Many people with M.E. have found it helpful to plan a certain time each day when they can rest e.g. in the afternoons – and it’s a good idea (and often essential!) to let friends know when you rest, so that they will not interrupt you. One thing that I have found invaluable over the past few years is having a phone next to my bed – so that if I am the only one in the house when it rings, I don’t have to get up to answer it!
If you do have a busy day, try and keep the next day or two free to “catch up” on resting. Learn how to relax – quiet music is often helpful. Some people find themselves permanently exhausted – and this is normally due to trying to do too much. Whilst it is tempting to try and keep working, even on a part-time basis, for many this is just not possible, and will only result in worsening and/or prolonging the illness.
Obviously the best form of rest is sleep! Some sufferers say that they sleep too much – this is wrong, as it is probably the best thing that you can do, particularly in the early stages of the illness or during a relapse. Unfortunately, however, it is often the case that although feeling totally exhausted it is difficult to sleep at all – due to aches and pains, muscles twitching, breathing difficulties, and so on.
It is a good idea to try and relax before going to bed, make sure that you are not too cold, don’t let your room get too stuffy, and don’t go to bed hungry! If you have a lot of muscle/joint pain, a warm bath is often helpful, as well as an electric blanket!
2) Diet – many people with M.E. have found that a change in their diet is helpful. Some “treatments” for M.E. can be very expensive, but modifying the diet isn’t so bad! Unfortunately, if you read through all the literature on M.E. you will soon realize that the advice on what to eat (or not) is wide and varied – with some diets being so restrictive that it becomes virtually impossible to maintain a healthy, well-balanced diet. If you find something that works then stick to it, but be careful – and, if necessary, take advice on the subject. So whilst there are no hard and fast rules as no two people with M.E. have exactly the same problems, here are a few general suggestions:
Foods To Avoid:
Sugar And Other Refined Carbohydrates – all types of sugar; white flour, rice and pasta; and foods containing these things – white bread, cakes, biscuits, etc.
Processed Foods – packaged foods; those containing additives, “E” numbers, sugar, salt. In particular, try to avoid anything that contains the artificial sweetener Aspartame and / or the flavour enhancer mono-sodium glutamate or any form of processed free glutamic acid (for further details click here and here).
Coffee, Tea, Soft-Drinks, Chocolate – herbal teas and decaffeinated drinks are OK, otherwise limit the amount of caffeine-containing drinks to 2 or 3 a day.
Alcohol – suicidal for anyone with M.E.!
Wheat/Gluten And Dairy Products – this does not apply to everyone, but some M.E. sufferers find that they cannot tolerate either one or both of these products.
Foods To Eat:
Despite the list of foods to avoid, it is still possible to maintain a balanced diet – which is probably more healthy than what you used to eat. Try to eat organic food as much as is possible in order to avoid the pesticides and other chemicals commonly found on and in many non-organic foods.
Fruit And Vegetables – try to eat a lot of fresh fruit and vegetables, in order to maintain a good intake of vitamins and minerals. It is best to eat them raw, but if you do cook them steaming is better than boiling. Fruit and vegetables also help ensure a good intake of fibre – which is necessary to help digestion, and is also found in potatoes, unrefined flour, brown rice and pasta, and in oats.
Protein – an adequate protein intake is also needed. However many people with M.E. cannot tolerate red meat or dairy products (although lamb can often be tolerated by those who cannot eat other red meats), but by eating poultry, fish and eggs, a good supply of protein is maintained. Eggs also contain B vitamins, vitamins A and E, as well as zinc. Live yoghurt is also a source of protein, and contains “good” bacteria which can help to lessen any bowel problems.
Complex Carbohydrates – provide “fuel” for the body’s energy. They are found in whole-wheat, potatoes, brown rice and pasta, and oats. They give a gradual rise in blood-sugar levels, instead of the rapid rise and fall of blood-sugar levels when eating refined carbohydrates such as sugar.
Fats – fish oils contain “Essential Fatty Acids” which are needed to maintain normal function of the immune system, muscles and nerves. EFA’s occur naturally in tuna, sardines and mackerel.
Vitamin Supplements – many people with M.E. have found it helpful to take various vitamin supplements. Whilst taking high-doses of vitamins is not always a good idea (unless given under medical supervision), certain individual vitamins can be helpful:
Vitamin A helps in building up resistance to infection.
B-complex vitamins help to provide energy for the body; help in the metabolism of fats; play a major role in the functioning of the nerves and nervous system; help to maintain healthy skin and digestion; are involved in the repair and regeneration of the liver, and in the production of red blood cells and haemoglobin.
Vitamin C is needed for repair and regeneration of body tissues; it also helps the immune system and is an anti-viral agent. It can be beneficial to take extra vitamin C when under stress or experiencing a secondary infection.
Vitamins A, C and E are anti-oxidants i.e. they protect against damage to body cells. Zinc is essential for the correct functioning of the body’s enzyme systems and is important in maintaining a healthy immune system.
Levels of vitamin D are often low in M.E. so it might be worth asking for a blood test to check. Vitamin D is needed to maintain healthy bones and teeth and helps regulate the immune system. Low levels have been associated with an increased risk of cardiovascular disease.
Vitamin and mineral supplements can be bought from chemists and health-food shops, and are also available from a number of places by mail order.
So two of the main ways to help yourself manage M.E. are Rest and Diet. It is also helpful if you can learn to pace yourself, so that you do not overdo it. Try to be aware of when you are getting near your limit. When you have a good day (they do exist!) avoid trying to do all the things you were not able to do the day before.
Try thinking of M.E. as being like having a large “energy overdraft”, and therefore in order to make progress you must never over-spend on energy! Rather, it is necessary never to push yourself too hard, reaching total exhaustion, as this will only prolong or worsen your condition. So, the sooner the illness is properly managed, the sooner progress is likely to be made.
Most of those who get M.E. were, before their illness, active and independent, not used to dealing with health problems – and suddenly having to cope with chronic ill-health poses quite a challenge! 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/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 Which strengtheneth me” (Philippians 4v13). 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.” “…In quietness and in confidence shall be your strength” (Isaiah 30v15).
With an illness such as M.E., which is by its nature very isolating at times, it is important to maintain outside interests in order to prevent concentrating all the time on your own situation. There are some activities that can be done by those without much energy – and may open up a new sphere of interest or ministry.
One thing that I have enjoyed over the past few years is letterwriting – I currently correspond with a few people with M.E., as well as a number of missionaries / Christian workers in various parts of the World. It is a real privilege to hear of how God is at work in different countries and situations, and obviously this leads on to another area of work – prayer! You don’t have to be at a Prayer Meeting to pray (although, if it is physically possible, keeping up attendance at a Prayer Meeting is recommended!). However, lying in bed is no barrier to prayer! Prayer-letters from missionaries are always helpful, as well as up-to-date needs from church, family, news items, etc, and will give plenty of “fuel” for prayer.
Other available activities open to us include reading. As Christians, it is vitally important to keep up with daily Bible reading. This can be difficult, due to fatigue and lack of concentration – but stick at it! Following a Bible reading scheme and/or using some good reading notes can be helpful, as well as having a “Quiet Time” at the same time each day. Reading other books is also good – and “talking books” on CDs are often easier to cope with than the written variety!
If M.E. prevents attendance at some or all of the church services, it is usually possible to keep up with the services by listening to them on CDs, MP3 downloads or even live online (see www.sermonaudio.com for many thousands of sermons freely available to download). One advantage of CDs and MP3s is that if you don’t take in what is said the first time round, you can listen as many times as necessary! Some churches also have an “Audio Ministry”, where anyone is welcome to borrow or buy CDs, as well as having sermons available on their church websites to download. For example, for some years I have been “subscribing” to CDs of the Sunday services and weekly Bible studies from the Metropolitan Tabernacle, London, and have been greatly blessed and helped through this ministry.
Live Services: You can watch live broadcasts from the Metropolitan Tabernacle, London – Sunday 11am Teaching Ministry; Sunday 6.30pm Evangelistic Service; Wednesday 7.30pm Bible Study. For further details go to: http://www.metropolitantabernacle.org/Live-Broadcast
The Metropolitan Tabernacle also have a good bookshop – and it is easy to order from them either online or by phone. Virtually all of the books that they sell are at lower prices than other Christian bookshops, due to bulk-buying. For further information contact:
Tabernacle Audio-Visual Ministry/Bookshop
Elephant & Castle
Tel: 020 7735 7076