RUNNING ON EMPTY
Women tackling the chronic illness CFS/ME that robs them of their life force
TRX at 6.30am followed by tequila on the rocks 12 hours later. For women who want to live life at their optimum, energy is currency. So, when an illness strikes that robs you of it, you’re left feeling not only devastated, but invisible, too. Here, one writer shares how witnessing chronic fatigue syndrome up close has taught her that energy is not a certainty, but a privilege
prawled on my bed at home in
Lincolnshire, I was thumbing through the newly released Harry Potter And
The Half-blood Prince when I heard a distressing moan coming from my mum’s room. Entering slowly, I found her, sweat-soaked duvet cast aside, writhing on the bed as her limbs shook uncontrollably and she tried to fix her frightened eyes on me. That day back in 2005, when I was 12 years old, was the first time my mum, Liane, then 45, found herself caught in the vicious throes of what was later diagnosed as chronic fatigue syndrome (CFS) – also known as myalgic encephalomyelitis (ME). Initial blood tests failed to reveal why Mum had suddenly become so sick and completely devoid of energy. After six months – having ruled out everything from glandular fever and thyroid problems to Lyme disease and multiple sclerosis – her baffled GP diagnosed her with CFS/ME (the slash is mandatory for medicopolitical reasons – more on that later) and later referred her to a musculoskeletal and autoimmune specialist.
In the years that followed, I watched as the unstoppable force that was the mum I’d grown up with – the energiser who took charge and galvanised everyone around her to get shit done – became relegated to bed for hours, days, weeks on end. My early teens were spent tiptoeing around our house while she rested. She was forced to turn her back on the 20-year career she’d built as a sexual and reproductive health doctor and my father negotiated fewer hours as an optometrist to try to navigate the dual role of primary carer and family breadwinner. Her long-time friends who failed to understand why Mum could be bedbound by early afternoon because she’d done a food shop that morning began to drift away. As the muscles on her slim frame wasted away, every hug became a tangible reminder of how much had changed. And while it was Mum whose body had been taken over, I resented how the illness impacted me, too. Schoolmates regaled each other with stories of summer holidays, nothing but a pipe dream for me now, and the idea of mother-daughter shopping trips was laughable. Not only did my day-to-day life undergo a seismic shift, but my idea of my future did, too. Googling the disease a few years later in the hope that I’d hit upon something that might help Mum, I discovered that CFS/ ME could be genetic. I was horrified. I’d inherited my mum’s natural drive and optimistic disposition; had I also inherited the illness that had quashed them both?
LOST CONNECTIONS
CFS/ME affects 250,000 people in the UK and an estimated 17 million globally.
The chronic illness is characterised by tiredness that renders you immobile, debilitating cognitive issues and acute sensitivity to light and sound. The severity can vary, and a quarter of sufferers are bedbound or housebound, often forced to rely on a wheelchair or live in the dark. Others you may walk past in the street and never realise, because it’s a ‘good day’. While CFS/ME can affect anyone, it’s most often diagnosed in women aged between 25 and 45 and has been described as the worst hangover of your life, multiplied beyond belief, that doesn’t fade after a good night’s sleep or a Berocca and a fry-up. ‘CFS/ME is, on average, more disabling than many other major conditions, such as rheumatoid arthritis or cancer,’ says Dr Luis Nacul, clinical associate professor at the London School of Hygiene & Tropical Medicine. At its most dramatic, CFS/ME can cause sufferers’ bodies to ‘crash’ – as my mum’s did when I found her in her bedroom. ‘In just a single day, my body failed me,’ she recalls. ‘With no warning, I suddenly felt very faint, my temperature spiked and I experienced disabling weakness. Overnight, heart palpitations, aching muscles, difficulty sleeping and trouble getting words out became my new normal – and left me utterly helpless. I’d always been on the go; now I had to choose between using the minimal energy I could muster on having a shower or making a phone call. Doing both wasn’t an option.’ And while the physical pain and complete lack of energy was debilitating enough, it was the feeling of helplessness that was killing Mum. ‘I felt like I was missing half my life,’ she remembers. ‘I was tired of lying in bed dreaming of all I wanted to do.’
So what’s the cause? Frustratingly, scientists don’t know, even though CFS/ME isn’t a new illness. Diagnoses of myalgic encephalomyelitis were first made in 1955 when, within just four months, nearly 300 members of staff at the Royal Free Hospital in London developed unexplained limb pain, muscle weakness, nausea, dizziness and severe headaches. Official recognition came in 1969, when the World Health Organization classified ME as a neurological disease. However, in 1970, psychiatrists Colin Mcevedy and AW Beard, in a controversial study published in the BMJ titled Royal
Free Epidemic of 1955: A Reconsideration, claimed that the condition was ‘mass hysteria’ on the grounds that tests showed no abnormalities or obvious causes of infection among patients. In an example of contemporary gender biases – and the dispiriting body of evidence revealing how women’s pain is often dismissed – the pair also suggested that female patients, who made up the majority, were exaggerating their symptoms. The study was influential and, for decades, the condition wasn’t taken seriously, with the media coining the term ‘yuppie flu’ and sociologists attributing ME symptoms to the stresses of modern life.
MIND VS MATTER
So effective was this legacy in cementing the condition as psychological – and thus by the conventional wisdom of the era, not real – that, up until 2016, The Royal College of General Practitioners classified CFS/ME as a mental health disorder, only recategorising it following years of campaigning, scientific findings that showed failings in the Mcevedy and Beard report, and the publication of research identifying early physiological markers. It’s such a politicised condition that it requires two names, as many believe the word ‘fatigue’ downplays how severe an affliction it is. Now, the NHS and most official bodies refer to it as CFS/ME. Since the term ME was established, scientists have learned that not all cases were caused by inflammation of the brain (what the
E of ME indicates), hence the renaming. Still with me?
The lack of understanding around CFS/ME means it has been historically overlooked in medical school (one source received only five minutes’ teaching time on the condition) and research funding remains negligible. In the past year, those campaigning for greater recognition of CFS/ME as a physical illness were given cause for hope when a team at King’s College London found a possible link between the condition and an overactive immune system. Lead author Dr Alice Russell explains: ‘Our findings in patients with overlapping symptoms suggest there may be a difference in the way the immune systems of CFS/ME sufferers respond to the initial immune or viral attack that triggers their symptoms, compared with the rest of the population.’ What’s more, a 2017 Stanford University study found evidence of an inflammatory disease in CFS/ME patients; Columbia University research showed disturbed cytokine (small proteins important in cell signalling) production patterns; and multiple other studies have suggested that the cells of CFS/ME patients are in a state of metabolic hibernation.
I discussed these findings with my mum. They certainly appear to tally with her experience; in the years before her first crash, she experienced an uncharacteristic series of infections. Ever the medic, she’s interested in reading scientific explanations for what
‘CFS/ME is, on average, more debilitating than arthritis or cancer’
happened to her body. The more they find out about what could be going on beneath the surface in CFS/ME sufferers, the more I worry about its potentially hereditary nature – but doctors believe that while there is a genetic link, it doesn’t necessarily mean that everyone in a family will get it, just like cancer or heart disease.
NOT SEEN, NOT HEARD
The condition’s physical impact was highlighted last year, when surfing world champion Tyler Wright, 24, revealed that CFS/ME had left her too weak to compete. Jennifer Brea – Harvard PHD student and creator of the award-winning CFS/ME documentary Unrest – was a keen skier and cyclist before the illness left her housebound. After catching a virus when travelling in 2011, she sustained multiple infections and never recovered. In one haunting scene, she tells a handheld camera: ‘It was like I had died, but was forced to watch as the world moved on. There are some days where I’m just doing a good job by holding it together and not killing myself.’
Indeed, a study published in 2016 found that CFS/ME sufferers are six times more likely to die by suicide than those unaffected by the condition. Energy is essential, and when you’re running on empty, the impact isn’t purely physical. ‘We socially reward people who work and contribute and perceive them as more deserving and more morally upstanding,’ explains Dr Tracey Collett, sociologist and associate professor in medical education at the University of Plymouth. ‘For CFS/ME sufferers, the roles they perform – as parent, partner, child, friend – are drastically reduced, but they’re rarely afforded the sympathy and care that would come with having another, better understood, condition. And to add insult to injury, their contemporaries move on without them, building relationships, having children, developing careers and travelling the world – all things that validate your sense of identity and worth.’ Indeed, I remember watching as invisible clouds obscured my mum’s sunny disposition. ‘There were times when I thought this living nightmare would never end,’ she tells me. ‘I was frustrated, low and any remnants of hope I had were drifting away.’ Of course, I’d known this. I’d witnessed her in tears over breakfast and when I came home from school. Because I felt her emotional pain so keenly, these incidents left me with tears running down my cheeks, too. ‘I never experienced suicidal thoughts because I had good spells,’ she adds. ‘But had I not – like so many sufferers – I can understand how the pain and loneliness could drive people in that direction.’
‘It was like I had died, but was forced to watch as the world moved on’
A LIFE LESS ORDINARY
When it comes to treatment after a diagnosis, CFS/ME patients in the UK are offered a combination of medication, graded exercise therapy (GET), cognitive behavioural therapy (CBT) and ‘pacing’
(an activity-management strategy aimed at limiting the number of crashes that sufferers experience). Their efficacy? Questionable. Last year, campaigners successfully put pressure on the authors of a 2011 study to reveal the evidence that led to their findings that CBT and GET were ‘moderately effective’ forms of treatment for CFS. It appeared that the unpublished data showed recovery rates had been grossly inflated.
My mum spent 10 years fruitlessly pacing her activity and taking medication to ease the pain, encourage sleep and regulate her immune system. She missed weddings, graduations, birthdays, holidays and funerals, experiencing the sting of unmet responsibility not only to us, but to her ageing parents. ‘I felt guilty about being utterly useless as a wife, mother and daughter,’ she recalls. She began to research alternative treatments and discovered functional medicine: a highly personalised type of alternative medicine that aims to tackle the root cause of a problem via tailored lifestyle and nutrition interventions – then nutritional therapist Marek Doyle. Despite the fact that his qualifications seemed less robust than those of the doctors Mum was accustomed to dealing with, she trusted his identification of several underlying problems, including adrenal issues, gut imbalance and inflammation – none of which NHS doctors had raised – which she believed were caused by her stressful lifestyle as a junior doctor in her twenties.
She began following Doyle’s suggestions of dietary changes and supplements to take. ‘Over the course of two years, there were ups and downs as my body started to function again,’ Mum recalls. ‘I woke up in the morning with energy and a clear mind. I could plan my life for the first time in years. A turning point was when I could finally visit London to see you,’ she tells me. ‘The weather was sunny, we walked and talked and I felt alive and part of the world again.’ Despite my cynicism as the daughter of a doctor, with four years behind me as a health journalist, I can’t deny that the transformation is astounding. Save the odd crash, I’ve got my mum back and it’s amazing. Girly days out are a joy and our lives no longer feel like they’re on hold.
FUTURE FACING
While society’s awareness of ‘invisible’ illness is increasing, and science is heading in the right direction – this January saw a cross-party parliamentary debate about CFS/ME and NICE is currently rewriting guidelines on treatment – we can’t forget those for whom progress is too late. My mum included. She lost 10 years of her life; the career she strived for was over, she had little faith in her own body and she lost out on being a mum – and a wife. There were no date-night dinners as her identity quickly transitioned from romantic
partner to someone who needed to be cared for.
Lost. Left behind.
Missing. The words that always come up when you speak to women affected by CFS/ME. It makes me marvel that, when I ask my mum to reflect on the years taken by the illness, she shows sadness but no bitterness. ‘It’s pointless to dwell,’ she says. ‘I just want to make the most of the future.’ I’m doing my best to follow suit, which is made easier by the fact that we can make new memories now. That little girl with her head buried in a book could not have imagined navigating her teens without the mother she thought infallible. Even more inconceivable was that my mum’s health would return, with no need for medication; that one day I’d find us pausing for a break on a full day’s sightseeing at my request, not hers. I lost my mum for a time, and it would be disingenuous to say that I’m not scared it will happen again. She fears that her body may let her down in the future – and so do I. From her research, Mum’s firm belief is that lifestyle is more important than any genetic tendency, but that’s something you can’t know for sure. What is more certain is my belief that good health and plentiful energy are privileges that should never be taken for granted.