IT was on 5 January last year that the foundations of Gary Burgess’ world fell apart live on television – not that the thousands of viewers would have known.
Broadcasting from the ITV Channel News studio at the Waterfront, almost every ounce of energy in Gary’s body deserted him and although he managed to put on a brave face, he says he barely got through the bulletin.
‘I had come back to work after the Christmas break of 2016 and while I was on camera, I had an out-of-body experience – it was like I was on the ceiling looking down on myself,’ explains Gary (42). ‘I was dead on my feet and when I got out of the studio I was wet through.’
In hindsight, he says there were warning signs months before.
‘I’d had an operation in August 2016 to deal with secondary lung cancer and I felt rotten for two or three months after that. I put that down to recovering from major surgery, so I came back to work in
autumn 2016, but things started going downhill in the December of that year. All through the festive period I was non-functional.’
It led to that disorientating January day at ITV’s studios – the last time Gary went into work. For the past 14 months he has been signed off sick – but the mystery illness was only diagnosed in November last year.
That was when he learned he was one of the so-called ‘missing millions’ – the masses of unfortunate people across the world who are reduced to a predominantly bed-bound existence due to myalgic
encephalomyelitis, otherwise known as ME.
The illness is characterised by recurring fatigue, excruciating bouts of pain and sensory distortion.
‘Everything is dialled to the max,’ he explains. ‘It’s like a switch in my body goes off and something as innocuous as bird song can be a serious distraction.
‘I was in a coffee shop a few weeks ago and suddenly the background music sounded like a disco – I couldn’t hear the person in front of me who was two feet away.
‘The ambient lighting in the coffee shop turned into something akin to an interrogation spotlight and the footsteps outside Liberty Wharf sounded like an army marching.’
ME sufferers also have to cope with what is known as brain fog – ‘you struggle to find the right words in a sentence when you’ve done too much in a day’, he tells me.
‘It is like having an internal battery that won’t fully charge. You start the day thinking you’ve got a 100 per cent charge, but some days after taking a stroll to my local coffee shop, I’ve walked home and my legs have buckled underneath me.’
ME also threw him into a depressive state and he admits to having had suicidal thoughts ‘more than once’.
He adds: ‘I had one at the end of 2016 when I was driving down Victoria Avenue and suddenly it flashed into my head that I should drive into the oncoming traffic
and end it all – although please rest assured that I would not do that, and I had the wherewithal to go to my GP straight away.
‘I now know I’m not about to throw myself off a cliff somewhere, but you do hear of people with ME who have killed themselves.’
Although he talks warmly about the ‘fantastic support’ given to him by his GP, he has been the victim of trolling on social media.
‘I’ve had many anonymous messages sent to me online from social media trolls saying “You’re making it up” and “You’re a fraud – you look fine in your social media pictures”. That’s where the frustration sets in about the lack of understanding people have about ME.
‘That’s why a year down the line I’ve thought that it’s time to talk about this because if I don’t, who else will?’
On Wednesday he brought the conversation to national radio when he guest-edited Radio 5 live’s Afternoon Session programme.
During the hour-long show, Gary explained to listeners what it was like to live with ME and he also asked the question, ‘why do we know so little about ME, an illness which affects so many globally?’
The programme included remarks from a medical expert who has been studying the illness since 2002.
‘It was interesting to hear someone say out-loud that one of the big barriers [to making progress in gaining a greater understanding of what causes ME] is the medical world arguing with itself,’ says Gary.
‘You’ve got the psychologists claiming it’s all in the mind and you’ve got other medics saying ME is something physical, biological and neurological – and that is absolutely what I believe.
‘But if the medics can’t agree about what ME is, what hope in hell is there of them applying for the funding to do the research to find the cure?’
This interview with Gary took place moments after his hour-long spot on Radio 5 live had ended.
‘I’ve had hundreds and hundreds of messages sent to me already on social media from people who have just been listening to the radio programme,’ he says as he glances at his phone. ‘The amount of Twitter followers on my account alone has gone up by 300 in the last hour.’
For Gary, more followers means increased scope for raising awareness about the illness.
As part of his mission to bring ME into the public’s collective consciousness, he has set up a website called Zonked Club – and in the last three days, the site has had more than 5,000 visitors.
On the website he blogs and vlogs – video blogs – about his condition, and shares tips with fellow ME sufferers.
‘I set it up last October because I wanted an outlet for my thoughts and feelings.
‘The tips I give can be daft little things like leave your dinner plates on the draining board on an evening so there are fewer items to get out of the cupboard the
next day. It sounds silly but when your energy is that low with ME, it makes a difference.
‘I also keep a diary at home and I put every task I need to do in it, and I grade them as either low, medium or high-energy tasks. Doing a media interview is high energy.’
Aside from the energy-sapping nature of ME, Gary says crippling pain will often overcome him on an evening.
‘I’ve not been to the cinema for a year because I can’t sit still for two hours as my body starts seizing up.’
Looking at Gary as he sits across from me in the BBC Radio Jersey studio, it would be easy to assume nothing untoward is happening to his mind and body – but he has been smiling through the pain.
‘Right now it feels like I am carrying five bags of shopping on each arm and my wrists and my ankles feel like they are killing me.’
This invisible aspect of the illness is the reason why ME sufferers face such a struggle trying to raise awareness of their condition.
‘When you start to manage the illness you get feelings of guilt because you might look fine and you might wake up feeling fine, so you also feel guilty for not being at work. You then try to do some work, but it puts you back several days.’
He ‘does the odd hour of work here and there from home’, including writing his JEP column, but says that previously accepted medical thinking – that people with ME should try to increase their exercise incrementally – has caused sufferers more harm than good.
‘The current guidelines in regards to exercise for ME sufferers have been absolutely discredited because there is now a huge amount of evidence to show that [following the national guidelines] leaves people bed-bound.’
Although he admits his life has been turned on its head by ME, he hopes the future will bring more joy than sorrow.
Gary is due to wed his long-term partner, Alan Stirling (33), on Easter Saturday at the end of this month and he says that despite the turmoil of the past 14 months, his fiancé has provided unswerving support.
‘There’s no one I’ve met in my life who is less judgemental and more understanding than Alan.’