WHILE having long Covid has meant quite a significant change of lifestyle for Lisburn man David Mayers, there has been one 'positive' to come out of the 20-month-long experience.
The crippling fatigue is something his son Matthew has been living with for almost 11 years and David, a former gym-goer, says it has given him a real appreciation of what he has had to contend with.
Now aged 25, Matthew was just 14 when he developed ME - or myalgic encephalomyelitis, also known as chronic fatigue syndrome.
The condition, which affects 7,600 people in Northern Ireland, is characterised by a wide range of other symptoms including muscle, joint and nerve pain, headaches, brain fog, irritable bowel and nausea.
Because there is no single test to confirm the condition, people can wait years for a diagnosis and, particularly in the past, sufferers were often not believed or listened to.
However, since the pandemic, the similarity with some long Covid symptoms has brought ME more to the fore, with the hope of fresh research which could ultimately benefit sufferers.
Matthew developed ME as a schoolboy after contracting two viruses in quick succession, and his health problems were exacerbated when this was followed by a diagnosis of fibromyalgia a year later.
Despite trying to return to school on multiple occasions, the fatigue and muscle pain proved too much, and he was signed up for home tutoring instead.
David (58) describes those as the "bad old days". With their son essentially confined to bed every day, he and his wife Ruth were their son's carers.
"Because he was so heavily medicated, he was like a zombie," recalls David. "We had to turn him in bed and even hold a drink up for him."
It was a cruel blow too for Matthew who, as an active teenager, had been enjoying school, friends and hobbies.
"I was definitely down," he admits. "I was in bed every day, although a lot of it I can't remember very well because I was on so much medication.
"There have been a few dark times over the years. It's very difficult watching your peers go on with life and leave you behind - university, girlfriends, even wives and children.
"That's probably been one of the biggest challenges of the past six years, especially in terms of mental health."
The past 11 years have, he explains, been a "journey" in learning to manage what his body is and isn't capable of and to pitch his expectations accordingly.
While he managed to achieve four GCSEs by dint of sheer grit and determination, he doesn't think he could manage an Open University course, given its length and the level of commitment required.
He has, however, completed short courses at the local further education college and a major achievement was passing his driving test, to which he dedicated a whole year.
"In terms of your mental health, you need something to aim for," he says.
"I suppose I am quite far in my journey of self-discovery and have learnt what I can and can't do. You have to lower your goals and recalibrate your expectations."
Even a seemingly simple act such as going out with friends has to be weighed up, as one evening of enjoyment and socialising may mean two days of recovery.
Five years ago, Matthew made the decision to come off all his pain medication, which he likens to "waking up from a comatose state".
His dad adds: "The medications weren't working for him so he went cold turkey, which was pretty hard going."
At present, Matthew self-manages the pain by not overexerting himself. His main problem is fatigue, and it's not just physical - even talking and recalling information in the course of this interview is mentally exhausting.
"I have to take little mini-rests throughout the day, just a wee breather, a little disconnect. I call it micro-resting," he says.
"You have to be in tune with your own body. Some days you might be able to walk for 15 minutes, other days five minutes might be enough. Everyone is different, especially with ME, as the severity of symptoms vary from person to person."
When he was first diagnosed, part of Matthew's treatment plan was graded exercise - increasing the amount of exercise he did every day.
"I didn't get on very well with that. It was damaging," he adds, which is why he welcomes the recent updated guidance by the National Institute for Health and Care Excellence (NICE) which includes scrapping that particular advice.
As well as a close group of friends who have stood by him from the outset, what has been a "real lifeline" is the world of online gaming, which has enabled him to connect with people from around the world at the click of a button.
"That has been my social network," he confides. "You find people with all sorts of problems and that in itself can be comforting because you know you're not totally alone."
As well as being a member of ME Support Northern Ireland, Matthew has also been volunteering with a group in England.
"I'm their youth representative. A lot of people with chronic fatigue or chronic pain tend to be older and they tend to be females. Young males are the rarest," he points out.
"I help plan sessions and facilitate speakers, and provide some technical support as well."
David, meanwhile, like his son, is learning to pace himself and take life one day at a time.
He contracted Covid in March 2020, right at the start of the pandemic, and spent a day in hospital on a drip after becoming delirious and falling at home, gashing his head.
He was off work for five weeks and is still suffering with severe fatigue and a very bad cough.
"I can very much relate to Matthew now," he says. "I am lucky enough to be able to work from home but as the week goes on, I am so glad to get to Friday.
"I used to sit up late at night, get up at 6.30am and go to work in the centre of Belfast every day. I would have gone to the gym three days a week before work.
"Now I would struggle to get out of bed at 8.30am and I am in bed at 10pm every night. Sometimes I can hardly turn over in the bed, my body feels that heavy."
David has been attending his GP who has referred him for long Covid rehabilitation and the new long Covid clinic.
"I can manage a half-hour walk some days and that's my limit," he adds.
"Before, I loved being outdoors, climbing Slieve Donard or going for a whizz around Rathlin Island. Not that's all gone. It does hurt me that I can't do exercise like I used to."
Both father and son agree there is a strong correlation between ME and long Covid.
Says Matthew: "Another name for ME is post-viral fatigue and that's really what long Covid is. There are a lot of similarities between the two.
"ME has never been very profitable for research because there's no treatment or drugs but now long Covid is a global issue it will hopefully encourage more research."
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MORE SUPPORT NEEDED FOR ME
WHEN Finaghy woman Antoinette Christie's son David was diagnosed with severe ME at the age of 13, two years after developing symptoms, the lack of knowledge and support around the condition led to her setting up a small, family-run support group.
That was almost 17 years ago and the quest for research and effective treatment eventually resulted in ME Support Northern Ireland, now a registered charity run by volunteers which supports people with ME, fundraises, lobbies, provides advice on benefits and organises awareness programmes.
Although David still has ME, and suffers from debilitating chronic fatigue, he has come a long way from the first five years of his illness when he was completely bed-bound.
Like many ME sufferers, his illness was triggered by a virus, and although he is unable to work, he devotes his time to volunteering with the support group and helping others, particularly other young people now going through what he did.
Having completed an Open University degree in Politics, Philosophy and Economics, one of the areas in which he is involved is lobbying.
In contrast to Britain, there is no specialist ME consultant in Northern Ireland, despite money having been ringfenced for it by the government a number of years ago.
Antoinette, who chairs the group, says: "It can be very hard for people to get a diagnosis and there's nowhere here where the GP can refer them to. Once people are diagnosed, they get more support."
And she points to the stark reality that a lot of their members haven't noticed much of a change in their lifestyles with the arrival of Covid.
"Staying at home or isolating is nothing to ME sufferers because they already live their lives like that," she says.
::Anyone wishing to contact the support group should telephone 028 9521 5650, email info@mesupportni.com or visit the Facebook page at facebook.com/mesupportni.
