Waking up? I found getting to sleep very difficult during the worst of it, but yes - that's what it was like. Horrible.

Chronic fatigue syndrome is the proper medical term. ME (myalgic encephalomyelitis) is a term created by CFS suffers in order to give it a more medical term so it is taken seriously. Even up until five years ago, many doctors (including me) didn't believe in CFS.

Having had a think about it a bit more, I actually worry a bit about what should happen to all the knowledge and understanding I've accrued in my head since I was born.

I can sort of see why folk want to believe in an afterlife, since it seems such a waste of time acquiring knowledge only for it to be snuffed out when you die.

Perhaps that's why I'm so keen on blogging and trying to get some of the stuff "out there" to add to the sum of human knowledge.

Strange you say that seeing M.E. has been classified as a neurological disease by the World Health Organization's International Classification of Diseases since 1969. But yes, many Doctors don't appear to be upto speed with it in the UK, unlike some other countries.

In my line of work, death and the contemplation of it is unavoidable. How we deal with it is also interesting.

For my part, twice in my life I've feared that I might have cancer. I was terrified and every now and again would burst into tears out of fear of death and more importantly, suffering.

Having seen many people with no hope suffering in unimaginable fear and pain, I have decided that for my part, I don't fear death- I fear suffering without hope. AND, as a husband and parent of two young children, I fear for my family if I was to leave them.

As to whether there is anything after. I am open to possibilities- Heaven, Hell, Valhalla, Paradise or reincarnation (or even spending eternity as a ghost) but there's only one way to find out, and if there is nothing then I will neither know nor care.

How we deal with death is interesting. As people who come into contact with it frequently, we can't take it all personally or we would go bonkers. Last year, I dealt with a rather unpleasant death (which turned out to be suicide) We were fascinated by certain aspects of it and we more affected by aspects of committing suicide than the spectacle we had just witnessed. However, had that turned out to be a child, I believe that I could have been off work for days/weeks/months.

Having dealt with people aged 10, 19, 21, 26 and others of a young age who have been dead or died later, has helped me deal with bereavement in my own family. Accepting that my elderly and not-in-the-best-of-health grandmother has died peacefully at 86 is easier when you've recently struggled (unsuccessfully) to save the life of a person in their twenties.

I don't want to get old ............

I've seen too many people, I'm not sure how to put this, "degenerate" or "degrade" comes to mind. Tis not good.

I already have the brains of a dementia patient at times. Unbelievably forgetful at times but I have worked out a system that eliminates most dangerous situations. Though apparently I am statistically unlikely to suffer Alzheimer's as a result. Must be something to do with whats left having to work a lot harder.

Absolutely. When my mother was having tests and they didn't know what was wrong with her, she was relieved to be diagnosed with MS rather than ME - with MS you're actually taken seriously and can get help. Without the support of your doctor and your employer, you could quite easily lose everything.

Trouble with ME is the lack of physiological signs - nothing shows up in blood tests, MRI scans or lumbar punctures.

I’d be interested to know why you didn’t believe in it - what your medical opinion was at the time, and what changed your mind. I know some would regard it as a kind of “skiving” illness, whereas others saw it as a genuine problem.



I must have been lucky, then. My GP at the time was generally up to speed on many things and during the course of my first brush with CFS, his knowledge seemed to improve. He was probably reading up on it in his spare time, and good for him for doing so (he was quite progressive in his outlook and would even consider heretical stuff like homeopathy if he felt it would help). When I had the second bout of it a couple of years later, he had started using different terminology. However, he told me there was no treatment for it he could offer, and he advised me to consult a local herbalist, which my mother did on my behalf (I was far too feeble to do anything like that myself at the time).

My dad knew a doctor through his orchestra, and this person had been on seminars on the subject, and was telling him that little was known about the condition, and that people were very keen to learn more, but there was not much research. One thing which was interesting was a possible link with glandular fever, which I had had as a child. This link had been mentioned by someone else who was helping me at the time, but to be honest I have no idea if this was ever substantiated. This was all between 1995 and 1999.



I had blood tests, but nothing more invasive than that. During my second bout, I was working for some very understanding people who let me work from home part time. I think my recovery would have been far harder if they had not let me do that or had kicked me out.

I think at the time I was a medical student. I remember a questionnaire went around organised by the more senior students (they were in year 3 or above, I was in year 2). I looked it up and figured it was just "laziness". Although my attitude with some of the diseases was a bit more striking (didn't agree with IBS, figured ADHD kids needed strict discipline etc).

The reason I didn't agree with the encephalitis bit of ME (and hence the naming) is that there's no inflammation of the brain.

Obviously I've learnt a bit more now but I've not come across a patient with CFS at the moment, despite practising for over three years. Then again, I guess it will be GPs who will encounter this more (seeing more of the general public than hospital doctors do).