How Does M.E. Start?

Often M.E. will start after an ordinary viral infection - flu' chicken-pox, even a cold. It is possible for an apparently healthy person to come down with a viral infection, and develop full-blown ME immediately. In other cases, there may be no obvious viral 'trigger' at all, and the person may 'slide' into the illness over a period of months or even years. Older people tend to develop M.E. in this way.

What Causes M.E?

It is not known exactly what causes M.E. but research has revealed a number of abnormalities in ME sufferers. Findings include; evidence of persisting viral infection, abnormalities in muscle structure and function, and evidence of damage to nervous tissue.

What are the symptoms of M.E?

The head symptoms experienced by M.E. sufferers include: Headaches, dizziness, 'swimmy' feelings and perhaps most difficult of all to handle, loss to concentration and short-term memory. ME sufferers will often forget things you have just told them, and will find it hard to take in new information - especially if it's complicated. These problems will tend to be worse the more exhausted the sufferer is, and mental exertion as well as physical, may itself be exhausting for people with M.E.

These are not only symptoms experienced in M.E. Sufferers will often feel 'ill all over', and experience many flu'-like symptoms; nausea, shivering, fever and aching joints. They may feel the cold very readily, and generally over­react to heat and cold. Digestive problems are common; constipation or diarrhoea, gas bloating and pain.

Depression and emotional problems are often a part of ME, but it is important to realise that these are a symptom of the illness, and not its cause. Some sufferers are very emotionally volatile and unpredictable - they may get angry or depressed for no apparent reason, or even cry at the slightest upset. This may be due to the illness affecting the nervous system.

Is M.E. a 'New' Disease?

M.E .has been around - under different names - for at least a century. It was probably seen before then, but perhaps in far fewer people. So it isn't a new disease - but rather a newly recognised diseases - and probably much more common.

Why is M.E. so Controversial?

There are a number of reasons for this:

-  There are such a variety of symptoms involved in M.E. that is a difficult disease to define clearly, and doctors don't like illnesses
that don't fit into neat diagnostic pigeonholes.

-  There are no clear tests to diagnose M.E. - it has to be diagnosed by doctors using 'clinical judgement' - ie listening to the patient's description of their symptoms. Doctors often
seem unwilling - or unable - to do this.

-  There is very little satisfactory 'orthodox' medical treatment for M.E.

-  Some of the symptoms of M.E. overlap with illnesses that doctors label as 'psychiatric' disorders, so M.E. has tended to be lumped in with these conditions in the past.

How Many People Suffer From M.E?

There are no statistics on the numbers of people suffering from M.E, but it is estimated that 240,000 people suffer in this country at any given time.

What Kind of People Suffer From M.E?

M.E. isn't 'Yuppie Flu'. This unfortunate tag came from the United States, and was probably invented by the media.  In fact, M.E. strikes people of all ages (including very young children and very old people), and all social classes.

There do seem to be more women than men with M.E, and the reasons for this are not known. One thing that is true of the vast majority of people with ME, is that they want to get better. The idea that people with this illness somehow 'want to be ill', or that they are 'malingering' is absolute nonsense. Most of them had an active, enjoyable lifestyle before becoming ill, and would like nothing more than to return to it.

How Long Does M.E. Last?

Many people experience a period of what is known as 'post-viral debility' - after having flu', for instance. This may feature many of the symptoms of M.E, but rarely lasts more than a few weeks. In a minority of cases, it may last longer, and it is generally agreed that if it lasts longer than six months, and the symptoms correspond, then it may be considered to be M.E.

M.E. can last anything from a few months to (in some unfortunate victims) decades.

Is There any Treatment for M.E?

The M.E. Recovery Group focuses on treatment using supplemental treatment and nutritional therapy. The group has had very good results, with fourteen members regaining a balance in their health, some of which now are feeling well enough to return to employment.

Although there is very little that orthodox medicine can do for M.E. sufferers, many have benefited from a self-help approach, and there are things that can be done to speed recovery.

Many sufferers have allergies to food or substances in the environment. So you may come across sufferers who are on restricted and apparently quite bizarre diets - there are good reasons for this (like they feel really ill if they break their diet). Similarly, some people with M.E. find that things like exhaust fumes, perfume or ordinary household chemicals affect them very badly - so they won't go near them.

How Ill are M.E. Sufferers?

Like any other illness, M.E. affects everyone differently, and some are more affected than others. The most severely affected sufferers are completely bedridden, in constant pain and unable to attend to normal bodily functions. Others may be in wheelchairs most of the time, occasionally accumulating enough energy to leave their wheelchairs for a short while. Those who are quite mildly affected may still be working full time - and appear pretty normal - but may be having to rest up every evening and weekend just to maintain their energy levels at work. Even quite severely affected sufferers may look healthy - be assured, they're not. The same applies in other illnesses such as Multiple Sclerosis.
M.E. is a very variable illness - it does tend to following a course of 'relapse and remit', and it may vary from week to week, day to day, or even hour to hour. So don't be surprised if one week an M.E. sufferer is 'up' and doing normal things, and the next they're in bed most of the time.

How Should I Deal With a Person With M.E?

The most important thing to remember, is that M.E. sufferers get very tired, and it may be disastrous for them not to rest when they need to, and for as long as they need to. Also, 'normal 'activities like conversation, which require very little energy from a healthy person, may be very exhausting for someone with M.E.
If an M.E. sufferer tells you they have to rest, or they cannot carry on talking to you, or they want you to leave, respect their need. It may seem selfish, but be assured - it is absolutely necessary.
Similarly, if a sufferer tells you they are not physically capable of doing something (eg walking to the corner shop) - believe them. What they may mean is that they might be able to do whatever it is, but know that they will suffer for it afterwards. Sometimes, an M.E. sufferer may appear quite stupid, because they don't seem to be taking in what you are saying to them. These problems of concentration and memory are symptoms of the illness, and will vary according to how ill the person is feeling, and how exhausted they are. Slow down your conversation, and if necessary say or explain things to the sufferer a second time. Remember that some people with ME are very emotionally unstable. Try to take this into account when a sufferer bites your head off for no apparent reason, or suddenly bursts into tears out of the blue. Don't always rely on a person with M.E. to do things they have said they will do, or stick to arrangements, or be anywhere on time. Often sufferers will make commitments when they are feeling 'up', and be unable to fulfil them when they are feeling 'down'. They may also be struck with a bad bout of 'M.E. memory', and forget entirely that they made a commitment at all...

Excerpts reprinted with kind permission from: MENorthEast.  www.menortheast.org

Scottish Charity Number-SC 034122.