Stuck at the bottom of a well

Me, very severe ME and the NHS

Today’s guest post is from 28-year-old Nick Benton, from Stockport, England. Nick has had ME for four years. Books and films are his favourite pastime, in particular Victorian novels and documentaries. He also loves watching football and hopes to resume playing when better. Where he can, he advocates for more research and better care for ME. Recently, Nick joined our #FundThePlan campaign, sharing his message to Wes Streeting and Ashley Dalton on Bluesky and Twitter/X.

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The exhaustion came out of nowhere on 1 December 2020. Ten minutes on a computer suddenly felt as cognitively draining as ten hours should. A long walk would leave me in bed for days afterwards. After many visits to the doctor, the cause remained a mystery. My GP thought it was stress-related, so I tried antidepressants and cognitive behavioural therapy (CBT). Neither worked.

Many months passed, and I wasn’t getting better. I felt very alone. I was 24, and my friends were moving to major cities to start their careers, whereas I was living with my parents and barely managing to work twice a week. The most frightening thing was not knowing when, or if, I would regain my health. Looking online, I found others with symptoms identical to mine who had something called ‘ME’ or ‘ME/CFS’. For two years following that day in December, my condition slowly deteriorated, and on 7 November 2022, I collapsed into bed and remained there for 18 months. Eventually, I was formally diagnosed with ME.

Neglect vs. reality

ME has been medically neglected for decades, and healthcare is sorely lacking. In the most severe cases, as seen from the recent inquest into the death of Maeve Boothby O’Neill, it is non-existent.

Many with ME report being disbelieved and dismissed by doctors. One 2013 study reported interviews with medical students about the condition. The responses illustrated all-too-familiar views and stereotypes:

‘I’ve got a stereotype in my head…it’s whiny…like whinyyy (laughs)’

‘I have spoken to doctors in hospital …they just say it's bullshit … that it’s just a made up thing… GPs will kind of make … comments about how … people are just lazy.’

These attitudes are especially shocking given how debilitated those with the severest form of ME are. I had to lie still all day, in constant darkness and silence. For months, I could not speak or feed myself and my thoughts disappeared, as if I no longer had the energy for them. Light and sound were intolerable, so I wore an eye mask and ear defenders over ear plugs at all times. The blinds remained shut and my dad had to tape over the cracks. It was like being stuck at the bottom of a well, unable to see out the top or be heard, with no-one knowing how to pull me out. And there was no end in sight.

If I exceeded my tiny energy limits, I would crash, and my condition would worsen for days or weeks. For healthy people, pushing your physical limits can make you fitter, but for ME patients, this can make us worse. I did not feel tired. I felt poisoned, like the energy was there but I couldn't access it.

My only respite from the silence came when my dad brought meals and medication or the doctor visited. When the door opened, relief washed over me, and I would savour the sound of every step, every word. Every day felt like three. It often felt unendurable, but I bore it one moment at a time, summoning all my will to lie still, only for it to begin again the next day. Most of the time, I had just enough energy to recite songs over and over in my head, which lifted my spirits. I Just Can’t Get Enough by Depeche Mode worked wonders. Eventually, I ran out of songs and began reciting the British national anthem.

Traumatised caregivers

The loved ones of those with severe ME often become their caregivers. As I could barely speak, my parents had no idea how I was feeling. I often had to communicate by miming. To see me, wearing an eye mask and ear defenders, frantically gesturing and mouthing, was nightmarish for them. My mum worked, so my dad, who was nearly seventy, was my main carer. As my bedroom was in the loft, this meant climbing two flights of stairs up to 10 times a day. I remember one night, several months in, him kneeling by my bedside and saying, ‘I really am at my wits’ end now.’ I was terrified the stress would kill him. I knew that, if it did, I would be too ill to attend his funeral or even grieve.

Shortly after arriving at a residential facility, November 2022. Nick stayed for seven weeks to give his parents a much-needed break. Image: Nick Benton.

The NHS didn’t know what to do

Our despair was compounded by the realisation that no-one within the NHS knew what to do. Months passed, and there were meetings, referrals, emails and phone calls, but little meaningful help. A year in, my parents wrote to my doctors’ surgery: ‘It feels like we are in an unending loop, being passed around as no one agency or person is willing or able to take charge and formulate a care plan for Nick, and as a result, after over a year of meetings, visits and half-promises, we feel very let down.’

The complexity of ME and the vulnerability of the severely affected, combined with the lack of training for healthcare professionals, exposes severe ME patients to a high risk of mismanagement, mistreatment or abandonment. I was lucky – I did not require hospitalisation or tube-feeding. However, although I struggled to speak, I received many unnecessary visits and phone calls, covering the same questions repeatedly. Each appointment would take hours to recover from and sometimes triggered a crash. No-one seemed aware of the NICE guidelines: ‘Risk assess each interaction with a person with severe or very severe ME/CFS in advance to ensure its benefits will outweigh the risks (for example, worsening their symptoms) to the person’.

In the ambulance on the way to the residential facility. Image: Nick Benton.

Once, a mental health worker arrived to conduct a mental health assessment (my third in almost as many months); I could only whisper a few words, so he left, frustrated. At another point, visiting nurses from my ME clinic recommended that I be sectioned under the Mental Health Act. (Thankfully, this did not happen.) Another time, a psychiatrist encouraged me to go downstairs for dinner, but since I could barely sit up or chew food at the time, I declined. One of his later reports stated, ‘[Nick] seems unwilling to engage with any suggestions for change to make progress.’ The reality was, none of these well-meaning clinicians knew how to manage severe ME.

Turning to private care

Realising the NHS could not provide the help I needed, my parents searched for a private doctor. Luckily, as private ME specialists are few and far between, we found one nearby who agreed to visit me. I had been bedbound for eight months by then. ‘Christ,’ I remember thinking as she arrived, ‘this is the most exciting thing that’s happened all year.’ She prescribed some off-label medications and supplements and told us not to expect a miracle.

In the following months, my thoughts returned. I started to feed myself again and whisper for short periods. I was, literally, able to smile again – when I did, my mouth muscles wobbled from deconditioning. The improvement enabled me to recite songs to myself again, which I gratefully resumed, gently clicking my teeth along to the beat.

Where I am now

These days, and 28 months since becoming bedbound, I am doing much, much better. I no longer need an eye mask or ear defenders. I shower every day, make most of my own meals, take the occasional trip out, and I’m slowly catching up on all the TV I missed. There are a range of things I credit for this, time being one. The journey here was not easy or quick, but it shows there is hope, even for those stuck in the darkest depths of ME.

Nick on his first outing in years after experiencing significant improvement. Image: Nick Benton.

But I was lucky. I had an understanding GP, a brilliant social worker named Wayne, a family that relentlessly advocated for me, friends who visited, and I could afford a private doctor. Many with very severe ME have none of those and are too sick to advocate for themselves. They lie in dark, silent rooms, some for many years, cut off from the world, receiving only the most basic care or none at all.

Had you been at my bedside back then, I would have whispered one thing: ‘Please help.’ It is time those in power see those with very severe ME in their darkened rooms and hear their agonising silence.