When people ask me what ME is, I try to remind myself that the knot in my gut isn’t their fault. No matter how well intentioned, the accompanying question: “Is that when you’re always tired?” – and knowing how far short from the reality this falls, is something I’ll never get used to.
It sometimes feels easier to admit defeat than divulge the reality. For me, ME mostly means heartache.
ME is watching my mum struggle to walk up the stairs most days, or to shuffle to the kitchen to take her painkillers. It’s hearing her mentally strain to engage in conversation; struggling to articulate words.
It’s the days in bed, not because she’s tired – but fatigued, in a painful slumber where any light hurts her eyes. It’s making sure she’s eaten and drunk fluids, gently nudging her awake every so often from the pain-induced coma.
It’s helping with school runs, looking after my younger siblings, and being on call when I’m needed. It’s feeling selfish for being healthy and frustrated at how someone else’s illness can limit my independence.
It’s knowing that walking half a mile to the local shop will mean my mum will be be bedbound for a week, but also knowing how much she’d love some fresh air and some sun on her face.
It’s a merciless elephant in the room that you can’t get rid of.
Despite all these feelings, I know I feel a fraction of her pain – and the 250,000 other people that ME affects in the UK alone. Myalgic encephalomyelitis (ME) is a chronic illness that impacts a range of the body’s functions, predominantly the nervous and immune systems. Affecting around 2.4 times as many women as men, the data we have on the amount of people suffering with this devastating illness is several years old, so it’s likely to be affecting far more people than we know. As it stands, there is no cure for the illness that leaves many unable to partake in normal life.
According to ME Research UK, it is at least as disabling as multiple sclerosis, congestive heart failure and other chronic conditions as it debilitates people both physically and mentally. It can even be fatal: Merryn Crofts died in 2017 just 10 days after her 21st birthday, after suffering with severe ME for six years and weighing less than six stone. Maeve Boothby-O’Neill, the daughter of Times journalist Sean O’Neill who campaigns veheremtly for awareness around ME, died last year at the age of 27.
Receiving diagnosis is a battle. The condition has been underrepresented and misunderstood and its treatment chronically underfunded for decades.
A 2016 report, the only overview of UK funding on ME ever commissioned, concluded that despite the significant impact that ME has on the economy and its victims, research and funding remain “chronically low”, despite the fact that the economic cost of ME in 2014-15 was at least £3.3bn in the UK, according to latest research.
Thankfully, for the first time in decades, the tide seems to be changing. Yesterday, the health secretary Sajid Javid announced a radical new approach to ME, promising to invest in research and new patient care in an unprecedent speech on the condition. Javid is the first ever senior government minister to speak out about the illness, and importantly, he vowed to put ME sufferers at the heart of the government’s plans, arguing that we must “trust and listen to those with lived experience” of the condition. The government hopes to become a world leader in tackling the illness that tears lives apart.
After being ignored and gaslit for years by many ignorant medical professionals who dubbed ME as merely a psychological illness – prescribing problematic treatments such as exercise that has often left patients bedbound for years – hearing the health secretary recognise it as an “incredibly disabling condition” feels like a momentous step in the right direction for ME sufferers and their loved ones.
I’m the last person to praise this dreadful government, but as someone who has first-hand experience of the unrelenting grief that this hidden illness causes, I feel a fresh sense of hope that my mum might be free from the shackles of ME one day.
The government must keep its promise and speak to those with ME to truly understand the weight of the task at hand, and to end the culture of victim blaming that hurts the ME community. Sajid Javid should speak to people like Harpreet Khan*, who has suffered with ME for 12 years, and has lost her job, her social life and precious time with her family in the process. She tells me that she finds it hard to describe the life-robbing symptoms: “Think about how easy it is for you to lift a hairdryer to dry your hair, now imagine that hairdryer weighs as much as a 10 ton truck. At my worst point I couldn’t get out of bed, I couldn’t move.”
A diagnosis can provide little clarity: “They haven’t a clue what to do so ply you with prescriptions, psychotherapy or whatever to avoid really looking at a person and investigating conditions,” says Khan.
Despite affecting more than twice the number of people, funding for ME is currently 20 times lower than for MS. Even research into male pattern baldness gets more funding – six times more, to be precise.
Managing to leave her house just once a week, Khan explains that the rest of her time is spent “paying back for the energy I used while I was out and trying to build myself up for another day”.
The lack of understanding both from medical experts and family and friends proves isolating: “You hear less and less from them, they say they don’t want to disturb you in case you’re having a bad day. They don’t realise that we need that support and to know we’re not forgotten.”
For Khan, turning to her own forms of therapy are her only respite. She is fundraising to create a wellness retreat for ME patients like her. Others are turning to alternative methods to try and ease the pain of their day-to-day lives, because there is no support elsewhere. My mum similarly uses art as an escape from the illness, but it doesn’t cure her pain.
With 17 million people across the world suffering with a debilitating disease that is unknown to most, the fight to eliminate the stigma against ME is now urgent. I hope that Sajid Javid’s committment to finding a cure materialises into justice for all those affected by the chronic condition. For far too long, ME sufferers have had to use the small amount of energy they have to shout for their voices to be heard. Now is the time to listen.
*Names have been changed
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