A DAD whose chronic health condition was initially diagnosed as long Covid has spoken of his agonising journey to recovery – unsure if he’ll be able to recover enough to continue his 31-year career in the Royal Air Force.
Fifty-year-old Simon McFarling’s life was turned upside down following a walk in October last year. Fearing he was having what felt like a heart attack, Simon called for an ambulance, and was hospitalised just five months after recovering from Covid.
Unbeknownst to himself and doctors at the time, Simon, from Weston-super-Mare, had been suffering from Chronic Fatigue Syndrome (CFS). The once competitive sportsman was left committed to a chair, unable to move around without experiencing pain and exhaustion.
While dealings with the disorder vary, the Personnel Officer lost his independence completely, and for the past 12 months, he has battled with extreme nerve pain, dizziness, exhaustion, muscle fatigue and, as a result, depression.
The dad-of-two is still unable to return to work, and although he has seen major physical and mental improvements since the ordeal began, he has had to adjust to a new way of life – and said taking up meditation and eBiking has been a ‘turning point’ for him.
Simon, a former Nordic skiing instructor, said: “I caught Covid in April last year and was bed bound with blinding headaches, loss of appetite, diarrhoea and sickness. One evening I felt really short of breath and was coughing a lot. I was going to dial 999, but I managed to calm myself down, and within two weeks I was fine.
“After that I was okay for three months or so, but I began experiencing tingling in my hands and feet, which I shrugged off. I carried on going to the gym, running and cycling.
“From there, my symptoms gradually worsened. One lunchtime in September I went on a run and, halfway through, my legs felt heavy – it was as though I had no energy whatsoever, which is very unusual for me.
“I put it down to being tired and overdoing it that day and went back to work from home.”
Simon was taken to the Weston General Hospital in October last year. After having already reduced his lunchtime exercise from running to walking, a short way in, he experienced a sharp, stabbing pain in his heart area and had difficulty breathing. He found himself drained of energy and disorientated.
He spent three days undergoing numerous oxygen and blood tests, as well as a CT scan, MRI scan and an ultrasound of his heart. He was diagnosed with long Covid and told his thyroid gland had crashed.
CFS, also known as myalgic encephalomyelitis (ME), is a long-term condition with a variety of symptoms, with the most common being extreme and often disabling fatigue.
Many of the symptoms are similar to those of long Covid, such as tiredness, reduced exercise capacity, feeling unwell, and memory problems. The severity of the condition varies between individuals, with some unable to return to a life without certain limitations.
“I was relieved I didn’t have a problem with my heart or lungs,” added Simon. “I was given medication and advised to rest at home.
“After I left the hospital, the pain and fatigue steadily got worse, and I could only walk for up to 10 minutes a day. Overnight I became committed to my chair, it was horrendous for me and my family. I used to be really fun, outgoing and full of life, and then one day I just wasn’t.”
By December 2020, Simon had been prescribed various strong pain medications. At a meeting with a specialist from the Armed Forces’ Defence Medical Rehabilitation Centre, near Loughborough, he underwent further testing on his heart and lungs, which appeared to be fine.
He was told that rather than having long Covid, it was more likely to be CFS, and that he would be referred for treatment. The condition can affect anyone, but it is more common in women and people in their mid-20s to mid-40s.
While there are many suspected causes of it, such as hormone imbalances, stress and certain genes, it is also known to be triggered by viral infections. Doctors told Simon there is no way of knowing whether having Covid triggered the condition in him.
He added: “As a family, we struggled through Christmas. I was very irritable because I was experiencing extreme pain all of the time, and was mostly chairbound. I couldn’t stand noise or anyone rushing around me and I was still unable to work.
“Sometimes I’d wake up in the morning and my hands and feet would be completely numb – I’d have to wake them up.
“Throughout this time my mental health declined. I was and still am suffering from depression and anxiety, and I lost three stone in weight, mostly through muscle wastage and not being able to exercise.
“From October to February I rarely went out. At this point, Covid was still rife and I was terrified of catching it again, not knowing what that would mean for me.
“I couldn’t drive anywhere as I was on too much medication, so my independence had gone, and my poor wife Caroline had to carry the family while working too – I couldn’t even help with chores.”
In April this year, Simon saw another specialist at the Royal London Hospital, after he was referred there by the RAF. His diagnosis of CFS was confirmed.
Having sold his carbon fibre bicycle, which he was unable to use, Simon decided to buy an Avaris 2.3 Road eBike – an electric bike with pedal-assisted power, which would allow him to cycle gently with ease when he was ready.
“The confirmation of my diagnosis was very difficult to take in and accept,” he said.
“I had to completely overhaul my diet by removing sugar and dairy, and had to resume and pace my exercise, starting with a 30-minute walk and 15 minutes on my eBike, if I could manage it.”
Simon fought the idea of having depression at first, believing he was only ‘down’ because of his physical situation, before realising he needed help. He started cognitive behavioural therapy and meditation, and the first time he did that, he burst into tears.
He went on a gruelling two-week rehabilitation course at the Armed Forces’ Loughborough centre in July, where to aid his recovery he took part in stretching and mobility exercises, hydrotherapy, yoga, relaxation, and had sessions with physiotherapists and an occupational health specialist.
The course provided Simon with coping strategies and an exercise, movement and stretching programme. He was advised to exercise within a heart rate of 140bpm and to listen to his body.
“I was really frustrated as I was hoping to go back to work after the course,” said Simon. “But the activities proved too much for me to cope with at that point and I realised I needed much more time to recover.
“They advised me not to jog when I left because my bones and joints weren’t strong enough, but they encouraged me to continue using my Avaris eBike every day, and that was a real turning point for me.
“My body wasn’t strong at all so riding a bike was a big deal for me, but it was so exhilarating getting back on one, I set the power at level 9, which provides you with the most pedal power.
“It was great to finally be able to get up to speed on a bike, and going up hills I felt like I was on flat ground, which was an incredible breakthrough for me because I’d usually be exhausted after just walking.
“eBiking has formed a massive part of my recovery physically and mentally, because I was getting that endorphin release I’d craved for so long, and it gave me a sense of freedom.
“Through the network of mental health and rehabilitation specialists along with the perseverance of my will to get back to the best I can possibly be, I’m beginning to see improvements in all areas of my health.”
As well as meditation and eBiking, Simon has turned to yoga, aqua aerobics, photography and drawing in order to keep himself busy and improve his mental wellbeing.
The RAF has supported him in a number of ways, affording him mental and physical support through a number of schemes, which help ensure the best possible recovery for the Armed Forces community.
The Armed Forces Department of Community Mental Health provided Simon with psychiatric professional help, including Cognitive Behavioural Therapy (CBT), while the RAF Benevolent Fund provided his family with access to counselling.
He is due to return to the Armed Forces’ Defence Medical Rehabilitation Centre in November, in the hope that this will further assist his journey to recovery, and that he will eventually be able to return to work.
Dr Edward Pooley, a GP based in Nottingham, who worked for the Derby Hospital CFS Service for three years, said it can be ‘challenging’ to tell the difference between CFS and long Covid, and the conditions can coexist.
“People with CFS can live the life they used to but this depends on the speed of recovery and access to treatment,” he said. “Many patients learn to adapt their lives around the symptoms, experiencing a degree of trade-off between the times they need to conserve energy and the times they are able to live normally.
“Anecdotally, patients who are able to exercise more control over their lives, their nutrition, work-life balance and interactions with family members tend to recover more quickly.
“Many of the symptoms of CFS are similar to long Covid, but with the latter, there seems to be more breathing difficulty and more issues with the functioning of the autonomic nervous system, for instance, blood vessel problems, blood pressure and heart rate fluctuations.
“We tend to find that many CFS sufferers have a family history, and people who have quite ‘Type A’ personality traits can be at significant risk of severe symptoms.”
Type A personality characteristics include being highly organised, ambitious, impatient, competitive and aware of time management.
Dr Pooley added: “The main treatment in the UK is currently graded exercise therapy, which aims to build the body’s tolerance over time. Occasionally, medications are used to reduce symptoms, but it’s difficult to systemically research treatments as funding can be limited.”
Following Simon’s ordeal and his success in using an eBike to aid his continuing recovery, Richard Heys, founder of Avaris eBikes, launched the Ride to Recovery Initiative.
The company, which aims to make a real difference to people’s lives, is giving refurbished eBikes to people with injuries, illnesses or ailments so they can stay active in a manageable way.
Richard said: “Not only is eBike usage good for the environment, helping people to reduce their carbon footprint by switching from cars, but they can also improve the health of users.
“An Avaris eBike can get people who need assistance and the confidence to start riding again back on the road. Using one can also take away the fear of getting too tired while riding and dreading whether you’ll have retained enough energy to return.
“You can cover much longer distances than you would normally, with the help of the electric assistance. We’re very pleased to have been able to help Simon on his journey to recovery.”