Why do we know so little about ME?
TV journalist Gary Burgess was diagnosed with ME late last year and started a blog on the illness.
He did a Guest Takeover on BBC Radio 5 live, asking why so little is known about an illness which affects so many.
I was live on air, presenting a report in the ITV News studio in January 2017, when it finally dawned on me that ‘soldiering on’ was no longer an option.
In the middle of a piece about maternity and paternity benefits, during the 6pm news programme, I had the most wonderful sensation.
I left my body, was suddenly up in the studio ceiling, and was looking down on myself, the presenters, and all of the camera crew. I was having an out-of-body experience.
That was my last full day at work. That was the day my life changed forever
I now know my body was shutting down, screaming for help and in need of total rest as it literally could not function properly. But my 286 day search for a diagnosis wasn’t easy.
I was one of the so-called ‘missing millions’ around the world, experiencing a medley of horrific symptoms that regularly left me housebound, sometimes bed-bound, for days at a time.
I was experiencing bone-sapping fatigue, like the worst flu combined with the worst hangover, together with pain throughout my body.
I was experiencing bone-sapping fatigue, like the worst flu combined with the worst hangover"
Then I had a ‘brain fog’ that left me unable to think straight, sometimes unable to know which toothbrush was mine in the bathroom!
Welcome to life with Myalgic Encephalomyelitis, also known as ME, or Chronic Fatigue Syndrome (CFS).
It’s been one of the toughest and most frustrating years of my life for many reasons.
When I am sitting at home, alone, doing absolutely nothing, I feel absolutely fine.
In fact, I feel a fraud for not being at work, convinced friends and colleagues think I’m pulling a sickie.
But then I’ll go for a walk, or meet a friend for a coffee, and it’s quickly apparent to me that there’s not much juice in my tank.
I think of my body’s energy reserves like a faulty mobile phone - you know the ones where the battery never fully charges - and the display jumps from 100% charged down to that dreaded 10% with little or no effort.
That’s me. That’s ME.
There’s no definitive test for ME, it’s a case of ruling out other things.
I’ve had operations for secondary lung cancer in recent years, and testicular cancer back in 1999, so at first I thought it could be related to one of those.
Yet test after test after test - and I mean a LOT of tests - came back with the news that I was, apparently, a picture of health.
Doctors at the hospital would be almost apologetic when they delivered that news as they, like me, knew I really wasn’t well.
I’ve had cameras explore my insides from both the top and bottom end, scans and x-rays, so many blood tests that the nurses treated me like a regular, and even a test where I was injected with insulin to send me into a state of near unconsciousness to rule out a tumour on my pituitary in my head. Not fun!
When the diagnosis was made, it wasn’t the diagnosis I wanted.
There’s no magic wand, no tablet, no medicine.
There’s a surprisingly small understanding of ME, and competing theories about its cause and about how to fix it.
For me it’s about rest and relaxation.
The moment I start worrying or stressing about something - even minor things - my body begins to close down. My vision goes blurry, my head, neck and back go sore, my arms feel like they’re on fire, and my legs can be so wobbly that they’ve buckled from under me while walking home.
ME forces you to become your own specialist. I’ve learned what works for me. I’ve learned to really carefully pace myself.
I get married in four weeks, so that’ll be the ultimate test of all I’ve put into practice so far.
Thankfully, I have the world’s most understanding fiancé in my husband-to-be Alan, who’s probably even better than me at keeping my enthusiasm for life, and desire to do things in check.
You see, in my head I’m the old me, but - for now - it’s about keeping things slow and steady, and reminding myself that focusing on me and my own wellbeing isn’t something selfish, it’s absolutely vital to survival.
The out-of-body experience was the straw that broke the camel’s back after months of feeling absolutely rotten.
Now I’m living a stuck-in-my-body experience every single day and wondering why we know so little about an illness which affects millions around the world?