This post has been written for ME (Myalgic Encephalomyelitis) Awareness week – 11th-17th May. It lists the main symptoms of ME, and describes something of what it is like for me living with this condition.
So, what is ME? There are several good definitions, and the one I prefer is the latest one, known as the International Consensus Criteria (ICC). This describes ME as “a complex disease involving profound dysregulation of the central nervous system and immune system, dysfunction of cellular energy metabolism and ion transport, and cardiovascular abnormalities” – and, like the name itself, if you think that’s hard to say, try living with it! ICC lists “the unique and distinctive characteristic patterns of symptom clusters” that can be used to recognise ME. These include:
- difficulty processing information, cognitive overload, short-term memory loss, etc., which sufferers usually refer to as “brain fog”;
- headaches, and pain in muscles, joints, abdomen, chest;
- disturbed sleep patterns and unrefreshed sleep;
- sensitivity to light, noise, smells;
- flu-like symptoms such as sore throat, sinusitis, swollen and tender lymph glands;
- stomach and urinary problems;
- sensitivities to food, medications, chemicals, etc.;
- dizziness, tachycardia, light-headedness, fainting;
- temperature problems, including sweating, cold extremities.
ME can be recognised by an appropriate combination of these and similar smptoms, plus what ICC calls “Postexertional neuroimmune exhaustion” (PENE). This is a better description than “post-extertional malaise” that had been used earlier, and refers to the tendency for any of these symptoms to be made worse by any sort of exertion (physical, mental, emotional), together with fatiguiability and the “inability to produce sufficient energy on demand”. PENE may immediately follow this activity, or may be delayed by hours or days, and can have a prolonged recovery period.
These symptoms will vary between people, and will also vary from one day to another for any individual. They also vary in severity, again between people and over time.
Unfortunately, there are also bad “definitions” of ME, especially those which say it is simply another name for Chronic Fatigue Syndrome (CFS). By itself, a name is not particularly important, but CFS describes a much wider range of conditions than ME, concentrates on fatigue or tiredness as the main symptom, and is generally considered to be a psychiatric condition.
The problem for ME sufferers is that most health services (including the UK and USA) will use the name CFS and its broad definitions, so that the only treatment offered is generally unsuitable for ME. The truth is that there is no cure and no effective treatment, although individual symptoms (e.g. pain) may be alleviated by standard medication. In some cases diet changes, vitamin supplements, etc., may also help.
Is ME life-threatening? Sadly, yes; there is a growing number of people whose deaths can be attributed to ME, or where ME is a major contributory factor. These are the extreme cases where symptoms are very severe, with constant pain, the inability to feed oneself, etc.
But for all ME sufferers, this condition is life-restricting, in that we are able to do much less than we could before getting ill. And the more severe the condition in an individual, the less they can do.
I’m fortunate, in that my symptoms are on the mild / moderate end of the spectrum; I know several people (mainly through Twitter) who are much worse off than I am. For example, I am not bedbound, except on very bad days; I am usually not housebound: I can drive or walk for short distances if I need to on a day or two in most weeks. I can look after myself (although showering sometimes causes me to feel faint, which is why I now use a shower stool), do some housework, and usually do the weekly shopping. I do get many of the symptoms that ICC describes, so fall into their definition, but not usually too severe. PENE is still a problem, though – see below.
But on some larger areas of my life, ME has indeed been restrictive, and these restrictions have been growing. I sometimes imagine this as being in a building where I used to be able to walk into any room I wanted, but over the years some doors have been closed to me, confining me in smaller and smaller spaces. Another door closed yesterday (1st May), hence the title of this post.
The first door was a leisure activity, hill-walking, which I have written about in more detail here. This was in 2006; but I was still working full time, and doing lots of things outside work, often for our local church, so it didn’t seem too bad. I took days off work when I was feeling bad, but gradually these increased until the point where I had to meet my manger and HR to discuss what to do.
So that was the second door: I agreed to cut out pretty much all non-work activity, so gave up several roles and responsibilities within the church. I had hoped this would only be for a short time, say a few months, until I could build up some sustainable energy, but it was not to be. After getting better for a while, the sick days started increasing again.
The next door, then, was that I had to give up full-time working and move to a four-day week. Again, it was only intended to be a temporary solution, but lasted longer than I hoped, and I began to think seriously about the possible need to take early retirement on ill-health grounds.
So in August 2009 the next door started to close when I made the decision that my working days were numbered, and I applied for ill-health retirement. My first application was rejected, on the grounds that I had not yet gone through the recommended treatment, and at the time I was waiting to see a consultant.
During 2010 I had several sessions which included elements simuilar to Cognitive Behaviour Therapy and Graded Exercise Therapy (fortunately applied much more flexibly than in many people’s experience), and in October the consultant signed me off as it had made no improvement. I was able to apply again, and this time it was accepted, making early retirement just about affordable without having to apply for benefits.
This door finally closed in April 2011; but this time it seemed to be a case of “where one door closes, another opens”. Our Church Secretary announced that he would not be standing for re-election, and the announcement came the day before the consultant signed me off. As this was a role that I had vaguely thought about in previous years, the timing seemed providential.
However, the years since retirement have seen my health deteriorate even further (measured by numbers of “good days” over a given period, as described here). I was becoming less and less cable of doing this job effectively, and finally decided to stand down, effective from a Church Meeting yeterday evening. Another door closes…
Although there is no treatment for ME, there are ways to manage the condition, and the one that most people find most helpful is known as pacing. This involves listening to your body, not going beyond your limits. Ideally, you need to set up a baseline of activities that you can do even on your worst day, and build on that.
I’ve tended to be a bit less strict in my pacing regime; but I do try to schedule activities and spread things out. For example, if I do the shopping in a morning, that’s usually it for the rest of the day. I also know that a day of excess activity is likely to be followed by several bad days (thanks to PENE), but sometimes this is inevitable when things have to be done, or when I choose to do something impiortant to me (like travelling for a holiday).
I have wondered, though, whether PENE works on a longer timescale: for example, when I have pushed myself over several months to keep working, is there a much longer payback period when I stop? Or perhaps the Secretary role was simply more stressful than my job as an IT consultant! Perhaps if I had taken a complete break from everything in the early days, I might be much better now, maybe even still working.
Whatever, having now given up practically everything outside the home (I’m still deputy sound system operator at church), for the first time I’m really able to manage life with ME properly, only doing things when I have the energy for them. Hopefully, this may show some improvement – watch this space!
I hope that this has given some insight into living with ME. Everyone’s story is different, but all of us feel the frustration of having to cope with a condition that restricts our life, has no cure, and is often dismissed by the medical profession.