M.E/CFS is a condition with a wide variety of symptoms, most commonly including fluctuating cognitive problems and fluctuating physical fatigue. The two interact, so you can have difficulty thinking after walking round the block.

There is a lot of controversy about the condition. Most people with M.E. think that it has a basically physical cause and use the term M.E. (Myalgic Encephalomyelitis) to describe it. Some clinicians see it as a mainly mental health condition. They use the term CFS (chronic fatigue syndrome) to describe it. This term is also used by clinicians who do not wish to express an opinion either way.

The term CFS can be confusing, because a large number of conditions caused fatigue but only this one tends to fluctuate wildly over short periods

There is a good introduction to M.E. here

SOME THINGS I WISH I HAD KNOWN EARLIER

I’ve had M.E. (chronic fatigue syndrome) since 1989.  I’m recovered to the point where it still affects my life, but I am much better.

This article is an attempt to give other people the information that I wish I had in the early days.  Don’t feel that you have to read it all at once, or indeed read it all! If reading is difficult get someone to read it to you.

I ought to stress that I am not medically qualified and what I have written is based on my own experience and that of friends.

HAVE YOU REALLY GO M.E.?

When I was first ill it was difficult to get a diagnosis.  Now M.E. is sometimes a dustbin diagnosis.  A doctor can say “You have M.E. and there is nothing to be done about it.”  There are a lot of illnesses that feature fatigue as a symptom.  These should be checked out first.

Some things to check:

  1. Have medical tests ruled out any other cause?:
  2. Do you have variable brain fog (where you cannot think straight) and variable fatigue?  – often varying from hour to hour.  This is often a feature of M.E. but not of many other conditions.

Get hold of Dr Charles Shepherd’s book “Living with M.E.”.  I think that this is the best and most sensible book about M.E. THAT I’ve read If what he describes is what you have then you may have M.E

WHAT CAUSES M.E.?

Nobody knows.  Lots of people have ideas and there is a lot of controversy about how far M.E. is a physical or mental condition.  Here are my current ideas:

I’ve been struck by how often M.E. is a disease of compulsive copers, people who keep going when the only sensible thing to do is to give up.  Does this sound like you?

Do you remember situations where you felt you had no energy left at all, but nonetheless the situation demanded that you kept going?  Perhaps you had walked as far as you could, but there were still a number of miles to go.  Perhaps you had had no sleep for two nights but still had a demanding day at work.  Perhaps you were exhausted, but your partner was ill, the kids were fractious, the shopping and two dozen household tasks needed doing.

You dug deep and summoned up energy you didn’t have.  Perhaps you took some caffeine or some sugar or something to get you going. You made a big push.  Your body started pumping energy chemicals and somehow you got though.

The next day you felt ghastly, and, if you were remotely sensible, you rested until your body returned to normal.

But imagine what might happen if your body got stuck in that mode where it was constantly pumping those chemicals. 

This is more likely to happen if you are chronically under pressure.  For example, if you are unfit and go to work on a building site, your body will force you to rest when you get home.  You will collapse. But if you are (for example) a teacher you are unlikely to get to this level of exhaustion.  Instead you may return home not quite so exhausted that you cannot stagger through making the tea and marking the homework.  What might this do to your body if you kept this up day after day?

An archetypical M.E. patient is a woman in her late 30s who is trying to manage a job and young children- someone who is particularly likely to be in this situation.  Typically it starts after some kind of illness like a viral infection when you try to push yourself to keep going even though you have not fully recovered, although for some people the condition comes on slowly.

I see M.E. as a chronic chemical effort malfunction.   The body is chronically producing the chemicals necessary for super-effort with the resulting bodily malfunctions that generate real and painful (though variable) symptoms.  These symptoms are not “in your head”.  They are the result of chemical processes in your body.

Pushing

What stimulates the body to generate these chemicals seems to vary from person to person.  For some people the process has no obvious cause. But often the stimulus is caused by someone thinking that they are in a position where they must do more than they have energy for.  It is easy to get into a cycle where you start to feel bad because you are pushing yourself to do something, so you push even harder, which makes you feel worse, and so on.

WHAT WORKS FOR M.E.?

You can find huge numbers of treatments and management programmes.  I’ve tried many of them. My general rule is to try something if two people whose views I trust have had a significant improvement in their condition as a result of the treatment or programme. If it is going to cost a week’s wages or more that goes up to four.

The things that have worked for me are:

  1. Pacing programmes
  2. The Lightning Process (controversial)

Claims are also made for Cognitive Behavioural Therapy (CBT).  Classic CBT does not, in my experience, work well  and can be very harmful in the hands of a practitioner unfamiliar with M.E. .  But some programmes marketed as CBT are actually pacing programmes.  Do check what experience the practitioner has with working with people with M.E. and try to contact someone who has been treated by them.