Lifestyle Changes Kept My Chronic Fatigue Syndrome at Bay for 20 Years

For almost a year, Jan Rothney says she endured an exhaustion so profound it felt “bone-deep”.

As a mother of two who was holding down two jobs in education, Jan was no stranger to feeling tired.

Even so, the overwhelming fatigue that struck in 2003, shortly after she recovered from a routine cold, was unlike anything the then-43-year-old had known.

“I went from being super active to completely incapacitated, mentally and physically,” says Jan, who lives in Devon. “It was terrifying.”

The transformation happened with startling speed.

One Friday night, Jan had been out at a pub with friends when she decided she urgently needed an early night.

By the following morning, she could not get out of bed. For the next month, she was barely able to raise her head from the pillow.

“I’d been severely run down, which had triggered the symptoms,” Jan says. “But it became clear this wasn’t simply ordinary post-viral fatigue.”

Eventually, a friend insisted on taking her to the GP, where she was diagnosed with myalgic encephalomyelitis.

Myalgic encephalomyelitis, commonly called ME and also known as chronic fatigue syndrome or CFS, is a serious, long-term illness for which there is no cure or targeted treatment.

One of the condition’s hallmark symptoms is post-exertional malaise, or PEM — a “crash” in which symptoms intensify after even limited physical or mental effort, such as taking a short walk or holding a concentrated conversation.

Unlike everyday tiredness, the deterioration can emerge 24 to 48 hours after the activity and is not relieved by sleep or rest.

ME/CFS may also cause brain fog, unrefreshing sleep and problems affecting several body systems, including dizziness, heart palpitations and difficulty controlling body temperature.

With experts still unable to fully explain what causes ME/CFS, treatment choices remain limited.

Patients are commonly advised to restrict their daily activities to avoid using too much energy. Painkillers and antidepressants may also be prescribed to help manage muscle pain.

Figures indicate that about 90 per cent of people with ME/CFS never fully recover, while around 40 per cent experience some improvement or periods of remission.

For Jan, the hardest moment came at a chronic fatigue clinic, where she was told she needed to accept that she might never return to her former life.

“It was soul-crushing,” she says. “And I refused to accept it.”

And she didn’t. Today, Jan is one of the miraculous 10 per cent of ME/CFS patients who has had a full recovery. 

Indeed, it has been more than 20 years since Jan’s last bout of extreme fatigue.

It may sound miraculous. But Jan, now 65, says she made a series of lifestyle changes to overcome her debilitating symptoms. 

Now, she hopes to encourage others with ME/CFS to do the same. 

The second edition of her book, Breaking Free from Chronic Fatigue and Long Covid, which details her experience, was published in July. And Jan now runs a programme, called Reset to Thrive, which provides coaching and teaching resources to others with CFS or long Covid. 

Jan’s theory is that you can overcome chronic fatigue syndrome by ‘rewiring’ the brain’s response to stress. 

And it is not without its critics.

Patient advocacy groups strongly caution against claims that the technique can ‘cure’ ME/CFS and there are very limited high-quality, peer-reviewed clinical research papers examining its effectiveness.

But a number of smaller, pilot studies have shown some promising results. A Goldsmiths, University of London analysis published this summer suggested that adopting a shift in mentality around ME/CFS, which Jan advocates, may help patients improve.

Interviewing 75 people who claimed to have recovered from the condition, researchers found that 95 per cent retrospectively linked their recovery to a change in mindset – with 80 per cent describing a similar ‘conscious decision to recover’.

Nearly all said they adopted a ‘mind–body’ or nervous system model where they moved from seeing the illness as fixed and irreversible, to something that is physiological but changeable, linked to stress, fear, and dysregulation.

Experts were clear to clarify that the findings do not mean that simply willing yourself to get better will cure ME/CFS.

But researchers said the findings should caution doctors against making definitive claims that patients will not recover.

‘Belief in recovery was the universal among those who got better,’ said lead researcher Dr Sarah Cefai. 

‘Withholding that possibility maybe one of the most damaging aspects of current care. What we tell patients matters. In conditions where medicine has limited answers, removing hope may worsen outcomes and recognising recovery may be one of the most powerful interventions available.’

Jan says she’s walking proof of the technique.

‘I clung to the fact I could recover by focusing on small milestones, like getting out of bed each day,’ she says.

‘Some mornings, I’d slide my bum down the stairs because it was just too exhausting to walk.

‘One day, I fell asleep in the hallway. When I woke up, I never knew how long I’d been sleeping for – it was either a few hours or all day.

‘But over time, I changed my attitude. I knew that I could overcome my symptoms, and I celebrated the tiniest things – such as lifting my head off my pillow, or sitting up in bed.

‘Eventually these little wins added up, and I was able to move again, and even, a year later, get back to work. But I had to totally change my lifestyle – cutting out negative people around me, allowing myself to take breaks and stop for a cup of tea, and finding joy again in simple everyday tasks.

‘It’s been a hard road, but I have more energy than ever before now. I’ve taught my body to thrive again. Many of us are given a wake up call to change the way we are living – and this was definitely that.

‘If I had carried on living an unsustainable lifestyle and accommodating everyone, I could’ve become far more ill. I absolutely feel that, in a weird way, this illness saved my life.’

Though only officially recognised by the medical community three decades ago, ME/CFS is now estimated to affect more than 400,000 people in the UK – the majority of them women.

Causing extreme tiredness that lasts for six months or longer and does not improve with rest, it can also lead to memory issues, trouble focusing and processing information and muscle and joint pain.

Research shows the condition can be triggered by infections – with many sufferers developing symptoms soon after recovering from a viral or bacterial illness, such as Epstein-Barr virus, Covid or the flu. Major life stress, physical trauma, surgery or accidents can also instigate the syndrome.

And a growing body of research suggests there may be a physiological explanation as to why some people are more prone to ME/CFS – with recent studies linking the condition to both DNA changes and immune system dysregulation.

‘What we know happens is that the brains of people with ME/CFS think that they are ill or under extreme stress, and this stops the body from producing energy, as a protection mechanism,’ says Professor Dmitry Pshezhetskiy, who specialises in treating ME/CFS.

‘We think it’s due to some sort of interplay between the brain and the immune system.’

People who were fitter or healthier before developing ME/CFS are often more likely to recover, says Prof Pshezhetskiy – but very few do.

‘When I see someone who has improved I tell them they are extremely lucky,’ he says. ‘And there is no one fits all reason for it.’

But Jan believes that her approach – which she’s dubbed the FEARLESS technique – can help others facing the condition.

‘I had been living an incredibly stressful, sleep deprived life for years – constantly doing things for others at the expense of my own health,’ she says.

‘So the first thing I had to do was strip away all of the stress and fear around my being ill – worrying that I would lose my house and job, which I eventually did.

‘Then I was able to focus on detaching myself from my symptoms – and believing that I can overcome them.

‘Each time I achieved something – even as minor as crawling to the bathroom, I celebrated it, rewarding myself for the effort. And my brain started noticing.

‘Any stress response can be overcome. And over time, mine began to reset. I had a million setbacks but each time I was back in bed or at the point of crashing, I focused on the fact that I had done this once and could do it again, my body just needs a bit of a break.’

After a year of hard work, Jan finally felt more or less back to normal – and was able to return to work. But she hadn’t, she says, properly overhauled her lifestyle – and suffered a devastating relapse of illness three years later.

‘It was really hard, as I started to believe then that I would never recover,’ she says.

But it was then that Jan instituted serious changes – divorcing her second husband, and massively cutting down her working hours, which were then 70 hours a week.

‘I had to learn to say no to people,’ says Jan. ‘I needed to be around people who were nurturing – not ones who constantly needed things of me. I had to learn assertiveness and how to walk away.’

Though the separation was devastating, Jan ultimately found herself in a much better place mentally, and was able to undergo the same long process to recovery as she had during her first flare up of MS/CFS. 

Today, it’s been nearly 20 years since that last relapse – and she hasn’t experienced another bout of extreme fatigue.

‘Now, I take breaks whenever I need – I know it’s ok to sit down and have a cup of tea. And I listen to others when they tell me I need to stop,’ she says.

‘Another massive thing was to set boundaries – I had to lose my second husband because I couldn’t always be doing things for others and putting up with crap all the time.

‘Now I’m with such a lovely man and have properly incorporated joy and leisure into my life – whether that’s walking the dog every day or spending time with my family.

‘I’m finally able to have fun without all of the debris around me.’