1. Introduction

A brief introduction about ME.

Hello! I’m Giles, and welcome to the first of a few short video blogs about ME - that’s Myalgic Encephalopathy, or Myalgic Encephalomyelitis - and Chronic Fatigue Syndrome.

Over the course of these vlogs, I’m hoping to talk about things like:
- what ME is, and what the symptoms are, and how it affects the lives of people who have it;
- how important rest, and pacing are, and sleep and relaxation;
- how to use food, nutrition and vitamin supplements; and which supplements may help to boost your cell energy, and immune system;
- how our adrenal glands get exhausted;
- how alternative treatments like herbs, chiropractic, and reflexology, could help some people;
- and finding psychological support and coping with stress.But first, I’d like to tell you a bit about my experience with ME:

Back at the end of my 4 happy years at university, I came down with a particularly nasty type of glandular fever, called cytomegalo virus (CMV). It made me extremely ill for several weeks, with loads of different symptoms ... and basically I never recovered. There were other complications too, and I was eventually diagnosed with ME. I’ve spent most of my twenties virtually housebound. At my worst, I couldn’t walk a hundred metres to the end of my road and back … I couldn’t read for more than half an hour in a whole day, and couldn’t use a computer at all … and every day I was having to make choices like, do I shave, or do I put the rubbish out, or do I talk to a friend on the phone for half an hour, or do I cook my lunch - because I just couldn’t do all of them.

If you see someone with ME looking normal, or even ‘well’, at the shops or the cinema, bear in mind that might be literally the only thing they are able to do that whole week. I’m not exaggerating when I say that no one can really understand what it is like to have ME, unless you have suffered with it yourself, or have lived for at least a week under the same roof as someone who has.

Thankfully, now I am getting better. I’m working, going out more, and getting back to other activities too. I still haven’t recovered completely, - but a few years ago, I couldn’t even imagine ever being able to do what I’m doing now!

Now, if you’ve got ME, I’m not going to pretend that I can do anything or say anything to make you get well. And it is certainly not your fault, you are not to blame for being ill or for not getting better.

Sadly, there isn’t one recognised cure or treatment for ME. Health services in this country often offer an approach of Graded Exercise, Cognitive Behavioural Therapy, and sometimes anti-depressants - but this approach tends to make people with ME even worse. So, if your doctor believes the outdated idea that ME is a psychological behaviour based on the fear that you’re ill when you’re not - then change doctors, and find one who recognises that ME is a real illness - as all the scientific research has shown that it is.

There aren’t any promises that everyone with ME will get well, or how quickly they might recover, or whether they’ll get 100% well, or 90%, or even just 50% ... ME can sometimes last a very long time, - but thousands of people who have had ME are getting better every year, enjoying time with their friends and families, working again, returning to sports and hobbies, holidays, and more - and feeling well!

I haven’t got any magic cure or secret insight. But hopefully trying to pull together the best acknowledged research (which is sadly on the sparse side), and the best accepted wisdom, and my experiences and the experiences of the people with ME I know and have met or just read about … I really hope that through a combination of things which could help different people with ME, that we can look forward to getting well again - as well as genuinely understanding and supporting people with severe ME.

I’ll be back again soon, to talk first more about what the symptoms of M.E are and how it affects our lives.