My head doesn’t lift from my pillow, my calves are cramping and my mouth feels as dry as a desert. Beside me is an untouched pint of water and discarded make-up wipes. Music and the scent of coffee waft through from the kitchen and, as I yank the alarm clock closer, I can see it’s gone 1.30pm.
This isn’t a case of an epic hangover; this is the reality of life with ME. A year ago, a typical Saturday for me would have meant bar-hopping until the small hours and face-planting a McDonald’s on the journey home. These days, I struggle to lift a spoon to my mouth and making a pot of tea can leave me bedbound for hours. ME – myalgic encephalomyelitis, also known as chronic fatigue syndrome – is the debilitating condition that causes lives to be taken away overnight. ME doesn’t care if you’re a busy working mum, an active teenager or a medical student with hopes of changing the world. ME has one goal – to rob you of everything you’ve ever known.
In June 2018, I became ill with viral meningitis, which led to sepsis, and ultimately to me losing my ability to walk. Despite that devastating setback, I recovered to an extent and went back to work as a freelance journalist later in the summer, also beginning to campaign for disability rights. But by August I knew something wasn’t right. I expected to feel rundown on a daily basis as my recovery continued – but the extreme fatigue, joint pain and constant sore throats refused to allow me to carry out basic tasks, such as having a shower or getting dressed. Headaches and stiff necks were part and parcel of meningitis recovery, but when doing a 10-minute radio interview would send me into a deep sleep for days on end, I felt I couldn’t carry on.
I began to research ME – something I vaguely knew about because my cousin had suffered from it as a teenager 15 years earlier. The NHS description read like my diary: housebound; flu-like symptoms; having sensory sensitivity and taking a long time to recover from any kind of activity. Visits to the doctor were initially met with concern but I was simply told to rest, something I couldn’t stop doing anyway. As I sat at home, watching my friends’ lives through social media feeds, my heart broke. I had no idea who I was any more or where I’d gone – I’d become a slave to an illness.
It wasn’t until December that I was diagnosed with ME, likely caused by the meningitis. Blood tests showed nothing unusual and I was lucky to have a doctor who seemed to understand my frustration and be open to making a diagnosis. Over 200,000 people in the UK su er from ME and more than a million in the US – that’s more than those with HIV or multiple sclerosis. Still, it’s little understood and difficult to diagnose, with many doctors putting periods of fatigue and joint pain down to the everyday stresses of modern life. Once low iron levels and vitamin deficiencies have been ruled out, patients must wait for at least four months before the NHS will consider diagnosing ME.
The notion that it’s ‘all in the mind’ is shocking to those who’ve experienced it, but the NHS still prescribes cognitive behavioural therapy (CBT), despite some patients claiming they see no improvement as a result. Many feel that the available support is inadequate. But there are signs of progress for people like me. In January, MPs took part in a debate after MP Carol Monaghan repeatedly called for better treatment for the thousands of people suffering across the UK. In an impassioned speech, MP Stephen Pound said, ‘All those people who have been ignored, belittled and insulted: this House recognises the reality of your condition...this House will devote its intelligence and its resources to resolve and to cure this terrible condition because we respect you.’
Five months later, and progress is slow but determined. Nearly 10,000 people have signed a petition by ME Action calling for further funding and a better understanding about how to treat the condition. And just last week, scientists revealed that a pilot study has devised a new blood test that can diagnose ME with 100% success. Personally, I want to see doctors stop recommending CBT for ME – it only fuels the idea our illness is all in our heads. And I want to see extensive training provided to Government bodies; the current disability benefits system – Personal Independent Payment – often fails us because we’re not ‘ill enough’ according to a tick sheet.
Although the tide is turning, ME is still dismissed – dangerously – in many cases. Our lives are vanishing before our eyes because of an illness that traps us in our own bodies. With the help of MPs, we might actually be able to see the light of day – as opposed to being confined to a life in bed.
ME Awareness Week runs until 12 May. Visit meassociation.org.uk for more advice