Last Updated: 3rd June 2007

What follows is my own experience of something that has been 'diagnosed' as CFS. I've written it up here because it affects most aspects of my life and having it here gives me something to which I can refer people whenever necessary.

What is CFS?

C.F.S. stands for Chronic Fatigue Syndrome but it's a name I don't like very much because it implies that all I need is a jolly good rest. I started with it in 1997 and I've tried having a jolly good rest as well as a bunch of other things that have made no difference.

What are the symptoms?

On a bad day it's like I have the flu but without the runny nose and sore throat i.e. tired, achy, no energy, unable to even think straight. I also get days when I'm physically exhausted but my brain still works such that I can read or write program code. Then there are other days when I'm physically fine but my brain is in zombie mode such that I struggle to make even the simplest decisions. There are other days when I'm just fine.

How come your description of it doesn't match with what I've heard elsewhere?

Because CFS is a kind of 'catch-all diagnosis'. In fact it's not even a proper diagnosis. Let me explain:

When I started with this in 1997 I saw various doctors and specialists who did blood tests, thyroid tests, adrenal gland tests, and a bunch of other stuff. I even saw a psychologist to check out the possibility of a psychological cause. None of them was able to identify the source of my problem... so I was given a diagnosis of CFS.

There was a time when ME and CFS used to get lumped together however the medics now know enough about ME that they can separate it out. I believe that in time they will be able to distinguish between even more of the problems that are currently being lumped together under the banner of CFS.

How does this affect your life?

The biggest problem is that it makes me unreliable because I never know how I am going to be on any given day until the day arrives. I can't hold down a job because no employer would be able to give me the amount of flexibility that I need. I am also unable to see shows, attend events, or travel in ways that would require advanced booking unless the cost is so cheap that I can afford to just throw the ticket away if I'm not up to it on the day. Family and friends also have to understand that I may need to pull out of something at the last minute.

Have you tried X?

If you think you know how to cure my illness or of something that helps, please have a word with your GP. He/she can write it up for the BMJ before writing a book together, opening a private clinic, and making a heap of money at the same time as becoming famous for curing people around the globe. In the process my own GP will get to hear about it and pass the information on to me.

My apologies for the sarcasm but after 10 years of illness I've been told about more cures and therapies than I care to recall. It's not that I wouldn't like to be rid of CFS (something we suffers get are often accused of if we are reluctant to try some supposed remedy) but if I were to try everything that everybody suggested I wouldn't have time to LIVE MY LIFE.

Do you have any advice for others who have it or think they might have it?

  1. If you think you might have CFS, start keeping a diary. I didn't start until I was six months in and by that time it was hard to remember the order of all the various events that took place. A diary may also help you to identify things that help and/or make you worse.

  2. Look for a forum or other group where you can talk to other people with CFS and get things off your chest in the company of people who understand what you are going through. I was lucky to find a good one in the early stages of my illness and it really helped. Alas I cannot simply send you straight there because as all communities, it has changed over time and is no longer the place it once was. Find a community that's right for you.

  3. If you do have CFS, learn to accommodate it. There is no real logic to my pattern of good and bad days. Taking it easy on a good day does not guarantee that the next one will be good. Neither does resting up on a bad day guarantee that the next will be better. What is guaranteed however it that if I don't take it easy on a bad day, the following day will be worse. I have identified a few things (especially caffeine and/or alcohol) that will allow me to push through a bad day if I really have to but I always end up paying for it big time when I use them.

  4. When dealing with officials (benefits agencies and doctors) it's worth remembering that there are many folks in this world with no employment prospects other than some low paid mind-numbing tedium, who would much prefer to spend their time glued to the television, and for whom a diagnosis of CFS would be a dream come true. The officials have the unenviable task of trying to separate them out from the genuine cases.
    In some ways I was lucky that when I got ill I had a really well paid job in IT and the lifestyle that it afforded me. It didn't take much, although I did have to point it out once or twice, to see that I was better off being well and working for a living than I was being ill and filling in claim forms for poxy state benefits. Another thing that has often surprised officials is when they ask me if I watch much TV and I tell them that I don't have one.
    You'll get much further with officials if you can make them aware that you make the most of your life despite of your limitations and that you'd be able to have even more fun if it weren't for the damned illness. As an example: I enjoy playing music but can't join a band because half the time I wouldn't be able to turn up to practice sessions and couldn't possibly play gigs.

  5. Be tolerant with people who think they know how to cure you.
    If some helpful amateur tells you they know of a cure then listen politely before either a) pointing out that lots of illnesses get lumped together under the banner of CFS and while their suggestion may have helped some people you don't believe it is appropriate for you, or b) say you'll research it on the web and ask your GP about it.
    If the person presenting the idea is your GP, listen to what they have to say, do some additional research, go back to them with any concerns that you have, and then try it - they could be right. Be wary however of new GPs who do not know you very well or any who say that they always treat CFS with X. CFS is not a single illness so there cannot be a single right way to tackle it. If you find yourself dealing with an arrogant GP then politely and subtly make him aware that you are trusting him with your wellbeing. A friend once told me that a new GP had suggest that he try something that he felt was entirely inappropriate however the somewhat GP seemed adamant that he knew best. Rather than getting upset my friend explained to the GP that he felt that such a course of action would most probably result in him having to be admitted to hospital but that he was willing to try it if the GP thought it was worth the risk. Unsurprisingly, the GP decided that it wasn't.
    Finally, if the person offering the cure/therapy is an alternative therapist of some kind, suggest that they give you the treatments for free (or at least the initial ones) and that you'll pay on results. They'll suddenly lose all confidence in whatever it is they were trying to sell you although they'll try to cover it by accusing you of not wanting to get better.