What is it like having M.E. they ask. I used to say, it's like a car without fuel. It won't go. But that's a bad analogy. It's more like a car with a faulty alternator. Not everyone will understand what that means, so let me spell it out.
Cars today are run by electrical circuits, as well as fuel. There is a thing called an alternator which charges up the battery as the car is running, otherwise the battery would be constantly drained. When the battery is flat the car won't run. Not only that, the electrically driven windows don't work, the sun roof likewise, the heater or air conditioning, and just about everything else, stops dead. So if the alternator is faulty, the car is in constant danger of being nothing more than an expensive ornament. Filling the car with fuel simply won't help.
Animals are much more complicated than cars, of course. We have cells called mitochondria which make energy, needed to run every system in the body, from the muscles to the brain. This energy is stored in the fat cells, our batteries. Without energy the brain doesn't function, the muscles don't function, the stomach can't digest, etc etc. There is a back up system consisting of adrenalin. You may have heard this referred to as the "fight or flight" hormone. It is produced by the adrenal glands and can be called up in emergencies to give an energy boost. Unfortunately, once used up it takes a long time to replace, so is only for emergencies.
Marathons runner tend to run on adrenalin, and afterwards need some time to recover. The subsequent "crash" is sometimes called payback. For people with M.E. that crash can follow a very small expenditure of energy: talking, thinking, going to the bathroom, eating a meal. Try to imagine how it affects your life, when everything you do leaves you exhausted for days.
If the mitochondria are faulty, we too, just like that car, become pretty useless. Unfortunately being fat doesn't help either because in M.E. the body can't call upon the energy stored in the fat. It doesn't matter how much fuel in the form of food is ingested, it isn't being utilised properly.
Not only that, if the brain isn't working correctly, every system in the body is affected, as the brain controls everything else. The kind of symptoms this leads to are many and varied, some less serious, some very serious indeed. Some people with the illness cope fairly well on a day to day basis, but are seriously short of energy, which is quickly used up and takes a long time to replace. This also leads to fuzzy headedness as the brain is short of oxygen, known as brain-fog, which describes it pretty well. An inability to concentrate, to take in information, or remember things. Rather like early Alzheimer's.
At it's most serious, sufferers are completely bed-bound, have to be tube fed, and in constant pain, unable to bear light or sound, as the nervous system is so severely compromised. Roughly 25% of people with the disease are severely enough affected to be either bed-bound or at least house-bound. It goes largely unrecognised, because they are rarely seen. Not for nothing is it known as the Cinderella disease, with M.E. acting as the wicked stepmother.
So you see, there isn't a simple answer. People with M.E. are more or less disabled by it, but all have this one feature...the lack of normal energy which everything needs for a normal life. The reasons are not totally understood yet, due to a lack of research, but it does appear that the brain and spinal cord are affected. In post-mortem examinations this has been shown to be the case. It seems that the mitochondria are not functioning as they should, though could be harder to prove. Dr Sarah Myhill and John Maclaren Howard have an ATP test to measure the mitochondria function, though this may not be something everyone has access to.
However, even that isn't the whole story. Tests on muscle tissue show that sufferers don't have normal muscle response to exercise. Instead of making them stronger, they become weaker. This is the reason why exercise is very bad for people with M.E. - it aggravates the problem.
There is so much more I could say about symptoms but it would take far too long and there are good websites which describe it much better than I can. The Hummingbird site is a good place to find out more.
Doctors, under the direction of various governments, choose to regard the whole thing as psychological. Much easier to blame the patient than try to find a cure or pay for disability pensions. Maybe that sounds cynical but the fact remains that time and again nothing is done to help these people. They are largely left to suffer, and what is worse, are castigated and made to feel like criminals, being told to snap out of it, exercise more, think themselves better. If the illness isn't "real" or doesn't have a physical cause, they can draw a line under it and forget it. But the approach used, graded exercise and cognitive behavioural therapy, do not and will not cure the problem of genuine M.E.
It will help people with other forms of chronic fatigue, of which there are many. No argument. But it's easy enough to tell the difference. If graded exercise helps, it isn't M.E. If it makes you worse, it probably is. Lyme disease, which often mimics M.E. having many of the same symptoms, can be treated with antibiotics which often in time effects a cure, though not always. So far nothing appears to help those with actual M.E. and won't, until more research is done to discover the basic problem and the cause of it.
There was a time when M.S. was regarded as psychological. Eventually doctors realised it was real and physical and though it can't be cured, at least sufferers were no longer regarded as malingerers or insane. Hopefully the day will come when M.E. sufferers are treated with the same respect.