Saturday, March 3, 2007

CFS/ME what's the difference?

There seems to be lots of confusion over whether CFS and ME are two different conditions, or the same illness. I would like to give my opinion on the subject.

As I search the Internet I have noticed that there are a number of differing opinions. There are those who use the term ME/CFS interchangeably and to mean the same illness, whilst others claim that ME is a different and more debilitating condition than CFS ; that ME is a more long-standing illness. People in this camp claim that ME is possibly caused by a viral infection where as CFS is expressed when an individual burns out physically. It is almost as if an elitism exists - an attitude that makes me very uncomfortable.

CFS and ME may initially be different illnesses, but if this is the case I think that it is important to note that their outcome is the same. It may simply be that the initial causative factor differs - i.e. an individual becomes debilitated after a virus or an individual becomes debilitated after burn-out. However, pathologically (i.e. in the body) the condition is expressing itself in the same way, whatever its label.

Lets take my own diagnosis for example. I was diagnosed with CFS after a series of multiple stressors - it seems that my body just gave up on me. Taken on face value we could assume that the stresses caused the CFS. However, this is a very Western medical way of viewing the illness, which does not connect past illnesses with present, and views disease in terms of what is presenting now or the symptoms, rather than looking at the whole person. However, if you go for a Perrin treatment, or visit the Bristol Frenchay Centre for ME and CFS, a complete history is taken of your illness from birth to present day. Why is this relevant? Because ME/CFS is a progressive illness and should not just be viewed in terms of the main trigger.

So if we take a deeper look at my medical history, it becomes clear that the point in which my body gave up following multiple stressors was not the start of my condition, rather it had been building for many years and this was it's crescendo. Like many ME/CFS sufferers I had early tonsillitis as a child - so bad that the poison from my tonsils was causing blisters in my stomach lining. I had eczema from birth, suffered a really intense bout of measles, and was what would generally be labeled as a 'sickly child'. During my teens I was constantly off from school with unexplained illness - general malaise and a severe lack of energy. This occurred so frequently that there was Social Services involvement. Just before my twenties I got a cold sore in my eczema which spread all over my body - I had over 1000 sores and was in isolation in hospital for some time. It took me 3 years to get my A-levels instead of 2, and 4 years to get my degree instead of 3. I was often tired and lacked energy, and would alternate between this state and being a complete 'fire ball'. At times I seemed to have spurts of uncontrollable energy and would be completely over-excitable. When my energy was down I fell into the cycle of using stimulants to keep me going, and lived on a rollercoster of adrenaline and energy crashes. When I did finally qualify as a teacher I always had the worst sickness record out of all the team. I never made it through a single half term without some time off for general exhaustion. I had severe blood sugar problems for most of my adult life although I was tested for diabetes many times and the tests became fine. 8 years before I had my major crash with CFS/ME I became allergic to alcohol, caffeine, sugar, wheat, and my digestion became very volatile. I left one teaching position in about 2003 due to exhaustion and spent 18 months recovering. I finally had to walk out of my position as a performing arts lecturer at the beginning of 2006 as I simply could not carry on. Also, six months before I became severely ill with ME/CFS I did have a very severe virus that was so intense that I hallucinated for days. This was the beginning of my decline and I had severe muscle pain and dizziness every time I stood up for the next six months before I finally crashed.

So the questions can be asked: is the CFS that I suffer from a simple matter of burn-out or is it an accumulation of all the illness I have suffered over the past 34 years? Was the initial virus six months before my crash the causative factor or was it the fact that I was so burned out physically that I was not able to fully recover from this virus? I know from talking and connecting with many ME/CFS patients that my story is quite a familiar one. So if ME and CFS are different conditions how can we tell which one I have if we don't have a reliable test to differentiate between the two? But more to the point, I feel that it is not important to me whether I carry the label of CFS or ME. What is important to me is what I do to get better. We could all waste a lot of energy arguing the corner about which condition we sufferer from or whether it's the same condition, and we could all play the "who's worse off than who?" game. But that energy would be put to a far better use if we spent it on ourselves and put it towards overcoming the condition - whatever you want to call it. It is my hope that we can move forward together and overcome this unhealthy attitude towards the labeling of the condition. We often feel isolated as it is without dividing among ourselves.

Wishing you health, whatever your 'label' may be.

No comments: