What Is It Like To Have ME?
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, often 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.
A recent thought has been that having M.E. is, in part, like living on a planet with much stronger gravity, but less oxygen. The daily struggle is enormous.
Most 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.
Brainfog
Maybe you've heard of brainfog. Perhaps you suffer from brainfog. If not, you may be wondering what brainfog refers to. Well, let me try to explain.
When I developed ME, Myalgic Encephalomyelitis, apart from the devastating and surprising refusal of my body to do the things it could previously do, my sleep suffered dreadfully. I believe this had a lot to do with the brainfog which I then started to suffer. Without proper sleep anyone's brain starts to misfire but added to the neural damage of ME it's a sure-fire way of not being able to function normally.
My sleep at that time was severely affected. Sometimes this meant being awake all night and, obviously, tired all day. Sometimes I did sleep at night, though the sleep was not like real sleep at all. I would become unconscious, switch off you might say, but wake suddenly in the morning without any sense of having slept. No drowsiness, no dreams, and I hadn't moved at all during the night. I don't know what kind of sleep that describes, not being an expert, but it isn't normal and it isn't refreshing or healing.
It would appear that, although I went to sleep, it was only into stage 1 light sleep; I never entered REM sleep in which dreams occur, or reached deep or slow wave/delta wave, sleep. During the deep stages of non REM sleep, the body repairs and regenerates tissues, builds bone and muscle, and appears to strengthen the immune system. So without that it's hardly surprising that ME sufferers are very ill.
I still have disturbed nights and reversed inner time clock issues, though when I do sleep now I do tend to sleep "properly". I have dreams, and often feel that warm drowsiness on waking, though not always.
However, when this lack of proper sleep goes on for months or years, it's no wonder the brain starts to give up. The inability to concentrate is the most obvious symptom. Reading, a favourite pastime, became such hard work. After a very short time my brain would feel "full". And, worse, I would read the same sentence over and over again before it made any sense. Watching tv game shows used to be fun, but now I found that by the time the presenter had got to the end of a question I'd forgotten the start of it. My short term memory was shot.
Losing words, in the way a stroke victim does, is also a problem. Everyone has this problem at times of course, especially as we get older, but with brainfog it's constant. Searching for the word you want is so frustrating, but in time I learned to stop trying and just either find another word that means the same, or just describe the thing I meant. I find now that just changing the subject in my mind, looking away as it were, makes it easier. When I stop trying, the word I wanted will sometimes just pop into my mind.
Personally I also lost the ability to type. I had been touch typing for many years but suddenly I found that, although I knew what I wanted to type, my fingers weren't getting the messages from the brain. I would type with the correct fingers but on the wrong hand, or the letters came out in the wrong order, and my thumbs developed a mind of their own and stuck spaces in wherever they felt like it. It's like a kind of dyslexia in reverse. There may be a name for it but I don't know that.
This is all very irritating of course. I still tend to spend more time correcting my typos than actually typing, thought it's not as bad as it used to be. At my worst I simply couldn't remember the alphabet. And at my age that's not funny. Well, not very funny.
Brainfog, therefore, is a way of describing the brain's inability to think, to concentrate, to work things out. Pretty much as it sounds really. I have to say that I have improved to some extent. I put it down to the handfuls of supplements, recommended by Dr Myhill, an ME specialist; in particular the brain feeding ones, which made a huge difference to my ability to sleep. Fish oils or other foods containing EPA and DHA for instance. The brain is something like 60% fatty tissue, so feeding this is important. However the thing that made the biggest change for me was PhosphatidylSerine, sometimes written as two words, an amino acid vital for neural function. Although normally the body can create it from foods it is being looked at now as a supplement for Alzheimer's patients.
I've seen various articles saying that PS helps, or it doesn't help, or it may help. All I know is that within a few days of taking it I started to sleep normally and over time my brainfog has improved. One quote says:
"Because PS is necessary for effective neurotransmission, PS deficiency is linked to mental impairment, including Alzheimer's and non-Alzheimer's dementia, depression and Parkinson's disease among middle-aged and elderly people."
Natural News.com
So whatever the nay-sayers may claim I know it did wonders for me. I don't have shares in any company whatsoever, so don't imagine I have anything to gain from this statement. I simply want to explain how I have improved my cognitive functions. Mind you, I've had ME for 29 years to date, being mostly housebound for the last few years so it may be possible that this has helped with some degree of recovery. However, the fact that this supplement worked within days, literally, to improve my ability to sleep, dream, and feel more normal, suggests to me that it isn't coincidence. It is, however, purely circumstantial evidence which counts for nothing with most scientists.
To have a brain that is akin to an elderly person with dementia, while you are still young, or fairly young, is very frustrating. We call it brainfog. It occurs in people with Fibromyalgia I understand, and quite possibly in other long term disabilities. My own experience is that it can be improved, if not entirely cured. I hope something I have shared here makes sense to others. I still have some problems myself, after all.