A Letter to New Sufferers

Though I'm not a professional, I hope the information on the site is useful. I endeavour to keep it up-to-date with the latest researches.

The problem with CFS is that, by it's nature, it is ill defined - chronic fatigue in the absence of any ongoing illness. So it is always important to have ruled out other illnesses first.

Talk to your doctor. Getting an "official" diagnosis is important, as it helps to refocus on what's important, especially lifestyle changes. It also allows other problems, like allergies, to be identified, and tests to be carried out (especially adrenal & thyroid).

If you're lucky you have a good doctor (though even they will sometimes struggle to help). Whatever, it's worthwhile contacting your local CFS association (see Resources), to get their leaflets - their "doctors' packs" can often help doctors who seem uninterested simply because they don't know what to do next.

Then the starting point is to retrain yourself to to manage your energy, and accept, and be proud of, a revised lifestyle (be proud that you don't "need" alcohol to enjoy yourself, or perfume to boost your ego). We are brought up to believe that we should strive on and on to get the best out of life. CFS demands a rethink - a new philosophy, where we "listen" to our bodies, and act appropriately.

In fact, I've heard it said that CFS is the body's call to change our lifestyle - getting to live with our bodies, not fight against then. It's seems tough to go against the norm, but surprisingly many "healthy" people say they would like a more balanced life (but never get round to doing it). It means less time, and often less money, but, it's still possible to enjoy the bits in between.

After all, our health is worth more that anything else ! Start to enjoy the good times, accepting that there will also be bad times, but do a little less than you can, rather than pushing after that little more.

Thought there is simply no "cure", there are things that do help. The key thing is to get some good sleep. Surprisingly for an illness about fatigue, which often start with excessive sleeping, it seems to end up with very poor quality of sleep.

Drugs that promote sleep, low doses of either traditional sleeping tablets, or anti-depressants do help (I found Zopiclone was the best), but they should be used only to kick the sleep patterns back, and then stopped, as they can also increase daytime tiredness.

Supplements and exercise which reduce the muscle pain are also a good thing. A varied diet is always good. A regime of magnesium, multivitamins may help, as will gentle stretching exercise, massage or osteopathy.

"Switching" or "Pacing" is a more recent concpet, which seems to have some merit. It is based on regular changes in activity during a day - even if it is switching from an activity to resting. Plan a day to stimulate different parts of the brain - read, listen to music, create things, exercise, rest; but all only while it doesn't tire you - then switch.

Graded exercise is a current "hot potato", generally because it seems to be badly applied. Doctors seem to love it or hate it! There is some evidence that as the illness improves increasing exercise helps; but, and it's a big but, inappropriate exercise (which may be as little as a short walk) will keep knocking the illness back.

The best advice when exercise does not cause a payback over the following two days; it can be increased, and not before. And start at low levels - just a stroll round the garden. Don't do anything to set yourself back.

Getting the message to friends and family can be particularly hard - one of the best things is to give them a "friends & family" leaflet from one of the associations to read (or get them to read The Bedtime Story ). It takes the pressure off explanations.

If you can, read the books in the Resources section, or get your doctor to read them. They really can help.

So, accept the limitations - if it takes 10 hours in bed to get through the day, then so be it. Make the most of the time you get. But remember that most do get better, certainly enough for a fulfilled life, but give it time to do so.

And, if nothing else, Keep Smiling.