chronic fatigue syndrome/ M.E

[TishArby]

Feeling like you cant spit your words out, forget the simple things,


Chronic fatigue syndrome also known as M.E (Myalgic Encephalomyelitis)

What exactly is M.E. then ? Well it`s many things depending on the individual, what can start in some people as a feeling of fatigue and sore muscles, or maybe they have just had some sort of illness and are not recovering like they should, can deteriorate into many other symptoms. These can be allergies, where before they were never allergic to anything in their life, an irritable bowel, though there were never any problems encountered before, fair enough some medications people are given could help contribute to that, but I think worry and stress are the most likely culprits here. The inability to walk any distance is quite apparent in many M.E. "victims", some can walk short distances but it takes it`s toll, it is not a case of they can`t walk, it is just very difficult if every step makes the pain in your leg muscles worse. Others just cant walk any distance because when they try they get about 50 yards and their legs just go from under them, or they cant walk far because they have dizzy turns or giddy spells, both common with M.E. Or maybe they suffer from severe chest pains and with every step these pains get worse, and they just cant go any further, it could be a mixture of these reasons, and there are some who can only get about thanks to a wheelchair.

Most people with M.E. find it hard to concentrate for any length of time, where once they would read a book from front to back in a day, they are lucky now if they can manage a chapter in a week, this like all other M.E. symptoms seems to vary from person to person. Short term memory seems to be another common problem, ask me what I did twenty years ago and I`ll tell you, but please don't ask me what I was doing twenty minutes ago as I haven`t got a clue. The one thing for sure that unites most people who have M.E. is fatigue and pain, having no energy to do even the most mundane task, anything physical usually results in putting them right back at the bottom of their attempt at recovery. It`s a nasty situation to be in, the temptation is to get up and do something when you are having a "good day" but this can be like grabbing a double edged sword, if your lucky it will only have a minimal effect on your health, but for many it is just as likely to put them right back at square one.
What do people class as a "good day"? well I personally grade my days from "1" to "10". The way I class this is "1" being the worst of days and "10" being the idea of perfect health (I wish). If I get a day of "5", that is a good day, a "6" is a "hey no pain day" a "7" is a "I just know I`m going to suffer for this day" (a "7" day is very rapidly followed by "5,4,3,2,1", days, mostly "7" straight to "1") and an "8" day is, well if I ever have one I will announce it here.



So what causes M.E.? personally I think the person who comes up with the answer to that one is going to find themselves very famous overnight. Theres lots of theories about what causes M.E. but I don`t think anybody really knows. Some ideas of thought are that it is a virus already present in peoples bodies just waiting for something to trigger it off, could this be why M.E. seems to start after some sort of illness ? It seems logical and makes a bit of sense but it is still just a theory.

Another thought that seems to come up more and more often is that it is caused by the "Coxsackie virus", now I`m no Dr so I`m afraid I can give you no more  But the Coxsackie virus does appear to show up in a lot of M.E. patients and that possibly takes us back to the first theory, so you can see a pattern emerging there.

One of the annoying (speaking for myself) theories is that it is a psychological illness, but as far as I can make out it is usually only psychologist (people who listen too much without really listening) who have that line of thought. They may think they are right but I don`t think anyone who has M.E. will ever entertain that thought. Not because they don`t want to be tagged with the label, but purely because all the symptoms are physical. Yes you may need psychological help at some time when you have M.E. but this is not the cause of the illness, it is more likely to be the result of the illness, it`s very hard to cope with being fit and healthy one day, then the next day your whole world collapses. Not knowing what the hell is wrong with you, not seeming to be getting any answers, feeling that nobody is listening, the worry, the anxiety, have I got some terminal illness ? how will I cope with no work ? how will I cope with no money ? you get depressed some even feel suicidal. So yes it may appear to be psychological, but it`s only after you have endured it for a while, and it all gets on top of you. It is not the cause

[TishArby]

So is it a "modern" illness ? Well not going by a couple of the books I have read, they at times talk about localised epidemics around the middle of the last century. I don`t know if I can agree, at least on these parts with those books, but hopefully their authors did do proper research before putting pen to paper. My cynicism comes from the fact that M.E. is not like a cold or stomach bug that you can pass on to other people, so how could you get a localised epidemic?. Maybe these people did have some sort of illness that M.E. emulates but I don't think it was M.E. and if it was, why are we not more aware of it, after all an epidemic is not something that is usually forgotten about. Or was it just a case of "we cant find anything that`s written in our medical books, so there must be nothing wrong with you" syndrome. This line of thought unfortunately still seems to apply in modern times, in some places. Gulf War Syndrome springs instantly to mind here, the startling thing is when one hears somebody telling their symptoms of Gulf War Syndrome, it sounds like they are describing the exact same symptoms that many M.E. sufferers have. Are the powers that be aware of this ? probably not. Not because they haven't been told, but because it`s much easier for them to stick their head`s in the sand and hope it goes away.
One thing that seems to be occurring more and more just recently is the number of children getting M.E. When I was first diagnosed with M.E. I was told that I fell into the most likely age bracket to get it. In my early 30`s, and with an active, busy lifestyle. But more and more there are young children getting it, not only teenagers but young primary school children. How their parents cope with that I don`t know, as it must be hell having a child who is always ill and you don`t know why. Some cynic might say that they are making it up just to get off school. I would say to the cynic, you don`t know what your talking about. Young children, some confined to wheelchairs, others not having the energy to do anything at all, some bedridden, never getting outside to play, never wanting to play with their friends, some not even playing indoors because they don`t have the energy and just want to sleep and be left alone. The authorities not listening to the parents, accusing them of putting the illness into their children`s heads, (it does happen) social workers wanting to remove children from their parents, accusing the parents of neglecting their children. And all because of an illness that we know very little about. Why is it affecting children more now than before ? is it caused by chemicals and pollution in the air ? I don`t know, but it is a worrying trend.

There must be treatment for M.E. surely ? No sorry there`s not. Yes people get medication while they have M.E. but it`s not for the M.E. itself, it`s for all the symptoms that they have because of their M.E. and how it affects them. Some pills for the pains, some pills for the migraines, some pills for the stomach and bowel problems, anti-depressants to help you get through the day, sleeping (oh the irony) pills to get you through the night.
There are of course those who believe that alternative medicine is the answer, the use of Aloe Vera and such like is often mentioned and recommended by people who have M.E. Fine if you can afford them, and if you think that they help, then do use them. I must admit to being a bit of a cynic when it comes to alternative medicines and think that they are nothing more than placebo`s, in other words you convince yourself that they are helping and thus they must be, but it`s more than likely that you are just having a "good spell" and it will be short lived. Apologies to anybody who uses or administers these alternative medicines, homeopathy or what other guise you would like to give it, this is purely my opinion and I have no wish to offend.
Some people try acupuncture and this can give some people a slight release from pain. I have tried it and it didn`t make any difference, but at least I gave it a shot. Some people have even tried hypnosis, but I can see no way that this would be of any possible help, unless of course as some psychologists say, that M.E. is all in the mind.

[TishArby]

M.E.myths

People with M.E. are just lazy

Oh yes how many times have I read and heard this one. Frankly if that`s what you think there`s no point in you bothering to look at any more of this site. On the other hand stick around and get educated you moron. You never know you might learn something.

If you have M.E. you feel tired and sleep all the time.

While this may be true in some cases it is not the main problem for the majority of people who have M.E. Yes we get tired very easily and without any effort, and we may go off to bed for a few hours, but think of it, if you are ill do you not do the same? If many other people who have M.E. are like myself they probably wish that this was the worst of their problems.

M.E. is all in the mind

The one thing to anger a person with M.E. the most.
A real bone of contention amongst many "sufferers" their partners and family.
We are not being ill for the hell of it.
We are not confined to bed for the hell of it.
We are not getting dizzy and falling down for the hell of it.
We are not in great pain for the hell of it.
We don't get depressed for the hell of it.
I could go on here but I think you may be getting the picture.

You only get M.E. after having the flu

No afraid not, M.E. is not really at all fussy about how you get it. True you are most likely to get it after some sort of illness but this does not have to be the flu. One of the theories is that it is a viral thing just waiting to be triggered by some sort of illness.
Note this is at this time just a theory.

M.E. is the ideal hypochondriacs illness as it cant be detected

Well that`s the problem with M.E. there is no specific test to determine if you have M.E. or not. All the poor Dr can do is make sure it is nothing more sinister or serious and that takes time, up to 6 months in some cases. But I`m sure that the medical profession has it`s way of finding out if someone is really ill or faking it. If you lived with, or knew someone really well who has M.E. you would have no doubts about how ill they are.

M.E. is a "sleeping bug"

A term used by a National newspaper who shall remain nameless, but if they can`t get it right and misinform people with inane comments like that, it makes it even harder for those of us with M.E. to be taken seriously.

[TishArby]

M.E.truths
M.E. can affect anyone

This is unfortunately very true. M.E. does affect the full range of ages from young children to senior citizens. Some think that the most likely age group is around 30 years old, but whether this is because of the lifestyle of that age group (burning the candle at both ends so to speak) or some other contributing factor I`m afraid I do not have the answer to.

M.E. affects different people in different ways.

I think that this is the one thing that people find hard to understand about M.E. especially to the outsider looking in.
How can case ( A ) just seemingly, be a bit tired and lethargic but still getting on with life.
Case ( B ) rarely gets out of the house because of an inability to walk any distance, looks all right most of the time but does have the occasional bad day.
Case ( C ) is, house bound, can be bedridden, a good day is just something they dream about, and invariably always looks ill.
While case ( D ) is totally bedridden, only gets out of the house to go to hospital if they have to and even then they are confined to a wheelchair.

M.E. has many symptoms.

This I think depends on the severity of the M.E. and also what medication you are given to help you get through the worst days. You may be given medication for depression (very common) but what are the side effects to that medication ? If your lucky it won`t make any difference, but from experience I can say that`s not how it works.
You may be unlucky enough to suffer from the following, in no particular order. Muscle pains, chest pains, headaches, sickness, diarrhoea, dizzy turns, migraines, fatigue, depression, panic attacks, anxiety, giddy spells, cold sweats, neuralgia, toothache, lack of concentration, and terrible short term memory. That just about covers all my symptoms then, but there are those worse than me.

M.E. makes you more susceptible to diseases.

Well I think so anyway and from what I have read I am not alone.
Catch a cold it hits you like the flu, catch a minor stomach bug you can forget about being all right in 24 hours, it will stay with you for days. What used to be a niggling headache is now a full blown migraine. And don't even get me started about toothache.