Me and ME
Me and ME go back a long way; I was first ill during my teens. A complementary therapist that my family knew diagnosed me with PVF (post viral fatigue) as I’d been ill, almost bedbound, all winter. I picked up but the following winter I was severely ill again. The therapist upped my diagnosis to CFS (chronic fatigue syndrome). I missed nearly two-thirds of my GCSE education because of illness. After seven years my GP (bless his cotton mismatched socks) finally agreed to refer me to specialist services. He still holds that it’s a psychosomatic condition but this a great step forward as he started with the belief that it was all made up (trust me, I’ve got better things to do with my life). The specialist team were surprised that I’d not actually been diagnosed by the GP as all the evidence was fairly conclusive and presumably being diagnosed should prompt the referral, not the other way round! Since then I have referred to myself as having ME. I haven’t seen the team for a very long time because there isn’t much they can do or offer. I’m supposed to be fairly adept at managing myself after all this time. Pacing was apparently the only thing that they could offer me and is often held to be the most reliable form of ‘treatment’ but the problem is that sometimes life gets in the way!
Some of My Thoughts on ME
In my opinion, ME sucks! (There you go, that about sums it up). But seriously, here’s some of my thoughts on the subject.
I still distinguish between three stages or grades of ME. (edit (07/12): This could also be seen as three distinct illnesses, see the Hummingbird website). This is the way I see it:
I think that many people, perhaps even increasingly so, have an episode of PVF after an illness. Maybe it’s because of our compromised immune systems, maybe it’s because of all the pressures and stresses we’re under, maybe it’s because we don’t take the time to properly recover anymore. This a short-term issues and with proper management, people make a full recovery.
Sometimes because of a virus or some other trigger, people go on to develop an illness in its own right, CFS. CFS to me is a fairly short-term problem although debilitating, a person may suffer from a couple of bouts but they can usually go on to make a full recovery. However some individuals may suffer relapse later in life.
ME is a severe, chronic condition that never leaves a person. It’s a lifelong illness which continues to affect the individual despite the good patches. Some individuals suffer a very severe form which is linked to increased deterioration and even death. Fortunately this is rare.
I also believe that PVF/CFS/ME can be umbrella terms, describing possibly multiple illnesses caused by various triggers and presenting differently in almost every individual. Whether conditions such as fibromyalgia are also linked under the same umbrella is often debated. The truth is, I don’t think anyone really knows.
I’m not even going to get started on causes and treatments! The whole thing is so hotly debated with everyone involved having their own particular preferences and pet theories, and that’s just the professionals. You’ll find plenty of information about that on the internet if you really want to jump in the mess.
Just a few links to some pages that will give you a little bit more information about ME if you’re wondering what it’s all about. I’m sure they can say it better than I can!
This a quick overview of some of the main symptoms of ME.
There wasn’t as much information around when I was a teenager but eventually I found this book in the library. It made sense of so much and explained things very clearly.
Possibly now it’s easier with the internet which can be updated so much quicker with the latest research but if you’ve got the energy and lay your hands on a copy, have a flick through.
Update (07/12): I am finding that The Hummingbirds’ Foundation for M.E site has the most accurate and reliable information. I have learnt an awful lot in recent months as I peruse the wealth of information available here, usually needing to look up every other word. My knowledge and appreciation (although not positive) of this illness has come along in leaps and bounds. Please visit this site, maybe starting with this overview.
To read a little more on my thoughts about ME, then visit the tag cloud in the right hand sidebar.