CFS & ME

This piece is an exception to the rule, it was written a while ago but I feel it's worth putting in my blog to help understanding of the reality of my physical symptoms.

Chronic Fatigue Syndrome is hardcore. I can't speak for those who have it mildly or those more severely affected, I can only describe how it has impinged on my life. I have quite literally been floored. Before becoming ill, I worked at least fifty hours per week, had a new job, which I loved, shopped, cleaned, cooked, went out; I was busy and enjoyed it. Probably, just like most of you. Take a second, reflect on your normal week, now remove 90% of your physical and mental activity. That is all CFS allows me to do, and often doing just 10% can be very challenging. Most of my day is spent on the sofa, the rest is structured and managed. 

I don't do "ill" and never have. When I have had time off it's usually been for serious problems. I am tough but this, well this has stopped me in my tracks. If I don't listen to the warning signs from my body I get even sicker, to the point of 0% activity, when even getting to the toilet is a struggle. Sometimes I hit 0% even after taking care. 

As soon as I was diagnosed I researched what I needed to do to try to get well and immediately put all management techniques (sleep hygiene & pacing being most helpful) into practice. I got professional help and use these aids everyday, they haven't cured me but they help. I have tried a number of treatments, none have worked. Unfortunately, there are thousands of claims of a CFS "cure" on the Internet. It is so easy to prey on us as a group as we are ill, vulnerable and want more than anything to get well again. The reality is the "cures" are very expensive and very few have gone through large enough medical trials to confirm their claims, if any at all. CFS remains a mystery clinically, the medical world so far has been unable to pinpoint the exact cause. There is a glimmer of hope as research carried out at St George's University of London seems to have identified seven distinct types (MS has 3 types), but it could be years until the research is completed. http://lib.bioinfo.pl/pmid:18057078 Therefore, all the so called "cures" are pure conjecture, and as CFS is different from person to person it is conceivable that some people have got well whilst undergoing certain ones. However, there is no way of knowing if they would have got well anyhow. 

In January 2006 I contracted an acute, atypical pneumonia then subsequently went onto develop CFS. Since I first became ill I have not had one day of wellness. For some people CFS comes and goes and they have periods when they return to normal health. I unfortunately don't. Some people go into full remission. I remain hopeful that I will too, but am also realistic. Many people never recover, and from what I understand there is evidence that those who like me also suffer pain with CFS are less likely to return to full health, if at all. Some become progressively worse. Not to be forgotten is a group of sufferers possibly 25%, who are so severely affected they are bedridden, many cannot feed themselves, or do anything other than lie in a darkened room with no distractions. 

There is a myriad of symptoms, which vary from person to person. Mine include the following: severe debilitating fatigue, headaches, pain (prickling, shooting, sharp, burning, joint, cramps), dizziness, nausea, muscle weakness, difficulty walking, disturbed sleep, cognitive difficulties (can be very severe), visual disturbances, sensitivity to loud noise, loss of appetite, intermittent tremors. This is not the full list but they are the main ones. Most of these are known as silent symptoms, as they cannot be seen only felt. You will notice from this list that CFS is far removed from plain fatigue or overdoing things, it is not the same.  

By writing this my aim is to raise awareness for a poorly understood illness as the government is doing very little to spread the word, and the CFS charities in the UK have hardly any presence in the wider public. One day, we will finally have the recognition we deserve and with recognition will come real help from the medical community. When this day comes, we will no longer be viewed as "hysterical" or "hypochondriacs" as we still are by some in society, including many doctors.

Chronic Fatigue Syndrome is also known as ME (Myalgic Encephalomyelitis) and Post Viral Fatigue Syndrome.