ME/CFS can’t be prevented, we all know that. But do we? Certainly it isn’t something that medical professionals talk about, or ME/CFS advocacy and patient support groups, and equally certainly there is no proven method of prevention.
I, personally, don’t believe that that means it isn’t possible. I think that we can protect ourselves, at least to some extent.
You can see why it’s not something that’s generally spoken of. Nobody knows what causes ME/CFS. Not only that, but there is no diagnostic test; not even standard diagnostic criteria. There is no known treatment and definitely no cure. Basically, it’s one massive mystery, so how could it possibly be prevented?
There are very, very few statistics about this illness, and even fewer reliable ones, but there are a few things that we know. While it is absolutely true that anybody, absolutely anybody, can get ME/CFS, there does seem to be a type of person who tends to be more likely to end up with it. This doesn’t mean that they will, or that others won’t, but these people appear to have a higher likelihood of getting it. Even so, there are no official statistics about this; the fatigue clinic whose services I use have been doing this work for a long time and have been able to observe trends to a certain extent, as have other groups who work with ME/CFS patients.
The type of people who, it seems, are more susceptible to ME/CFS are the people who work hard, who are perfectionists, who are driven, who are ambitious; people who find it hard to say “no”, who love to help others or feel the need to help others, who have a strong sense of responsibility. The people who feel that they must do a thing they have determined on, whatever the odds.
It’s the people who push through, who are ill but go to work anyway, or decide to stay just another hour to get the job done. The people who find it hard to ask for help. The people who believe that not listening to your body is a brave or righteous thing to do. The people who don’t want to let their family and friends down, who want to live up to others’ expectations of them. The people who want to live up to their own expectations of themselves.
I’m not blaming the individuals who get ME/CFS here; I’m doing the opposite. I’m pointing out that we are victims. Victims of our western, capitalist society’s expectations. Here in the UK, you must be productive to be respected by society, and by productive I mean specifically that you must be seen to be producing. This makes us feel bad when we take time off, or ask for help, or stop socialising (because socialising is another important part of appearing successful).
The second problem with the prevention of this illness is that it’s always diagnosed too late. According to the current NICE guidelines, a person must have had the symptoms of ME/CFS for four months before they can be diagnosed. An unofficial standard among medical professionals seems to be to diagnose Post-Viral Fatigue Syndrome in the short term (even though it is now classed as exactly the same illness), and ME/CFS after six months or thereabouts.
The trouble with this system is that firstly, many people don’t get diagnosed even in those time-frames; a huge number of people take years to receive a diagnosis or never get diagnosed at all. And secondly, even if you are diagnosed relatively early it’s still going to be at least a few months into your illness and by that time it’s often too late. By that time, you’ve got it solidly and recovery is going to be really, really hard. Or impossible.
I firmly believe that there are warning signs for ME/CFS, and that people should be made aware of these so that they can do something about it before it’s too late. Here is a list of some things I believe can be early warning signals from your body. These are purely anecdotal, from my own experience, from what I’ve read and from what others have said to me. I’m sure I’ve missed many.
1 Have you been ill more often than usual in the last few months or years? There is often an illness which is considered a “trigger” for ME/CFS (for example, I had quinsy and simply never quite recovered), but it seems common for people to have more illnesses than usual prior to this, or illnesses that drag on for a long time. This includes any kind of illness, from colds to cancer, and take notice of your digestive system too, particularly if you’ve had to be more careful of what or how you eat.
2 Have you been more tired than usual in the last few months or years? This may, as it was for me, be tiredness that it seems easy to push through. You sleep and you feel pretty much all right again, it’s just that it’s happening more often than normal. Perhaps a couple of times a week rather than once or twice a month. More for some people, less for others. It’s all about listening to your own body.
3 Do you feel that you’ve lost stamina in the last few months or years? Until about a year before I had the illness that triggered my ME/CFS I could walk eight miles a day without a problem and did so regularly. In that year preceding my trigger illness, my stamina decreased significantly and I would only be able to walk three or four miles without effects. Also notice what happens when you take exercise; most healthy people find that exercise makes them feel better. Have you noticed that this is no longer the case, or that a certain amount of exercise does, but more than that reduces the effect?
4 Have you noticed more pain in the last few months or years? Of course, pain can be caused by many things, but it’s still something to be aware of. Perhaps you find that you ache more after exertion, or that you ache after less exertion than previously. You may find that you ache for no apparent reason. There are other kinds of pain to be aware of too. If you’re a person who has periods, perhaps you have noticed them becoming more painful; or perhaps you have headaches more often, or even just those random pains that seem to come and go in any body.
5 Have problems with thinking, concentrating or remembering developed for you in the last few months or years? Perhaps you’ve had to start writing things down a lot more than you used to, or have to use a calculator where previously you could have done the sums in your head. For me, these things were certainly a small problem prior to my “trigger” illness, as was difficulty in reading and thinking through complex ideas.
6 Have you had more problems with sleeping in the last few months or years? Maybe you’ve started waking up in the night, or perhaps it now tends to take you longer to get to sleep. Notice how you feel after sleep: for most healthy people, sleep makes them feel refreshed and seems to wipe away most of the tiredness or aches from the day before. Have you noticed that sleep no longer has quite the refreshing effect that it used to?
7 How is your mood? If you suffer from mental illness, have you been worse than usual in the last few months or years? If not, have you been feeling more depressed than normal? Perhaps things have been upsetting you more than usual, or you feel angry or anxious more often. Maybe you find it harder to cope with difficulties that previously wouldn’t have bothered you.
8 What do you usually do when you do notice any of the above items? They aren’t things that most of us, when we’re healthy, think much of. We assume that a lazy weekend or a couple of lie-ins will fix things, or that we’ll feel better when that busy phase at work has died down, or when the kids are a bit older and we have to do less for them. We think that once this bout of depression or anxiety has let up we’ll be back to whatever our “normal” state is. If you’re someone who usually pushes through, you should take particular notice.
Of course, these are all very, very general bodily signs that you might be a bit run-down, and often they can be remedied with a few days of rest, or a few weeks of taking things easy. But it’s easy to never quite get round to having those days or weeks of letting up, to keep pushing through, and that’s when things can get dangerous. Naturally, you might not end up with ME/CFS. You might end up with nothing at all; just a life of feeling like you’re always doing a bit too much, and some people are fine with that. Or you might end up with a different illness. And I’m aware, too, that most of the things I’ve listed above can simply be signs of getting older! Even so, they shouldn’t be ignored. Older people can get ME/CFS (and other illnesses, chronic or otherwise), too. So can children, and we should take notice of these things in them, too. In addition, some people will get ME/CFS however careful they are. Taking care of your body is no guarantee; I just believe that it can help.
With all those provisos, I think it’s important that if some of these things ring a bell with you, you should take action now. At a stage where just one or two of them are affecting you, a lazy weekend or two might really be enough. Take it. If you have more of them, or a few restful days don’t seem to crack it, you might need to take a bit more time to rest. Ask for help. Most people love helping others, and when you’ve recovered you can return the favour. Take the time off work, assuming it won’t get you sacked, even if you feel that you are letting people or yourself down. You’ll be letting yourself down a lot more if you end up like me. Do whatever you need to. And learn to be aware of what your body is telling you. It’s easy, when you’re healthy, to ignore signs, and that can be dangerous.
I’m also very aware that for some people asking for help or stopping doing things isn’t possible because of the situation they live in; and that some people can’t take time off work, or time off caring for others. I understand that, and to you I say how very sorry I am. Nobody should have to live in a situation like that, whatever the cause. Do what you can, how you can. I hope that one day life will be easier for you.