ME Awareness Press Release: Brits with devastating illness speak out about years lost in lockdown | 01 May 2020


John Siddle, PR Manager, ME Association.

HUNDREDS of thousands of disabled Brits are no strangers to the isolation being forced on the population by coronavirus – and this month they are sharing their stories of years lost behind closed curtains.

Sufferers of the cruel, unrelenting disease M.E. are bravely speaking out as society also learns what it can feel like to be excluded.

Some 265,000 people in the UK have (myalgic encephalomyelitis – also sometimes called chronic fatigue syndrome), including children and teenagers.

Visit the Media Toolkit to Download Posters and Graphics for ME Awareness Month.

It is a disease that can dramatically impact a person’s ability to function and is often triggered by an infection from which people never seem to recover. It doesn’t discriminate, affects all ages and ethnicities and there is no effective treatment.

One in four are so severely affected by the condition – which is characterised by crippling exhaustion – that they are rendered housebound or bedbound. They are often confined to their beds, unable to walk, and need help even to shower – an action that could then lay them low for hours, or even days.

There is no known cure – and worse still, there sadly remain vast misconceptions – even in medical circles – that M.E. is ‘made up’, ‘in the mind’ or even ‘laziness’.

For ME Awareness Month in May, campaigning charity The ME Association is sharing the stories of real people whose lives have been effectively quarantined.

ME Association Chairman Neil Riley said: “Sadly, and suddenly, populations around the world are learning what it is like to be socially restricted, housebound and isolated from friends and family.

“The feelings of exclusion that many have faced are what thousands of M.E. sufferers deal with on a daily basis. But for us, this is not temporary, there are no restrictions that can be lifted – with not even a glimpse of a cure on the horizon.

“We are glad to share the stories of real people with real M.E. in the hope that we can raise money to fund vital research to unmask this horrific, indiscriminate disease.”

There are also concerns that coronavirus could trigger post-viral fatigue conditions, possibly including M.E.

After the SARS outbreak in 2003, some people in Toronto, Canada, who were infected were recorded as experiencing fatigue, muscle weakness and sleep problems up to three years later.

Medical adviser to the ME Association, Dr Charles Shepherd, said: “The coronavirus pandemic means it is quite likely that some people will be developing a post-viral fatigue syndrome, which may then lead into an ME-like illness. What happens to people after the acute infection is clearly something that needs to be researched.”

Sophie Jordan

A NURSE left housebound after being struck down by a devastating disease has spoken out about living in a permanent quarantine.

Mum-of-one Sophie Jordan, 39, spoke out about life in perennial lockdown after being diagnosed with the devastating energy-sapping condition M.E. (myalgic encephalomyelitis).

Sophie Jordan.

The former coronary care nurse, from Taunton, Somerset, told how life changed beyond recognition after crashing with the illness five years ago.

Sophie, who relies on the care of husband John, 46, said: “My life has changed hugely. I’ve gone from being fit and confident to being overweight and timid. I crave the person I used to be.

“I am 40 this year but feel more like 80. I had to give up a career I loved but it was killing me. I couldn’t cope and now I’m jobless for the first time in my life.

“To lose my good wage and be reliant on benefits almost caused our marriage to breakdown because of the pressure on my husband. We now have to live on one wage.”

Sophie, who has a two-year-old son, Bodhi, spoke out to raise awareness of ME, which many GPs struggle to identify because it cannot be diagnosed through blood testing.

“I am a full-time mum, which is wonderful, and I am so grateful, but it has its own challenges. I have to sleep when he naps during the day so I can manage him in the afternoon.

“Bodhi wakes at 6am and goes to bed at 8pm, so this is hard. Every day I’m faced with having to climb a mountain just to survive.”

Emma Sweetman

Mum-of-two Emma Sweetman, 42, spent a decade in isolation at home after becoming severely ill with M.E. in 2004.

For the past six years she can only leave her house in a wheelchair for short trips.

Emma, from Eastbourne, Sussex, said: “I am mainly housebound so for me this isolation is normal life. We are used to spending lots of time at home. I feel like I am trained in isolation.

Abigail, Isaac and Emma Sweetman.

“I have had years of not being able to do anything. Years of not being able to socialise or be with people properly.

“It’s a different way of life when you are plummeted into silence with a body that is unable to do anything.

“Anything I do physically can put me back in bed with more pain and exhaustion. I can’t put into words what it is like being bed-bound not for days or a week, but years.”

Emma, who is wife to Jonny, 39, and mum to Abigail, 11 and Isaac, 8, uses a wheelchair on the rare occasions she does leave home.

She said: “Not being able to walk is one of the hardest things I have had to come to terms with. I may never walk or run again properly, and that is heart-breaking for a sporty person.

“After 10 years of being housebound, I can now go out for short periods, I switch between an electric scooter and a push wheelchair to get around, this enables me to get out for fresh air without walking and getting tired.”

Kate Stanforth

Kate Stanforth.

Kate, 25, from Northumberland, was training to be a professional dancer when she was struck down with M.E. aged 14.

She has spent more than a decade using a wheelchair and is essentially housebound.

She said: “Life before ME was a very different picture. I was training to be a ballet dancer which meant dancing for up to seven hours a day. I’d join in with any sports I could, my grades were high, and I was happy.

“I used to be Kate, the prima ballerina, destined for a life on stage. Then, I became Kate, who no-one saw for years and forgot about. For people who don’t have a chronic illness who are reading this, being forgotten about is hard.”

Ellyn Gould

Teachers thought Ellyn was playing truant when she was unable to attend school because of M.E.

Despite the disease being the leading cause of long-term school absence, the 16-year-old’s parents were threatened with court action over their daughter’s attendance.

Ellen, from Weston-super-Mare, Somerset, said: “M.E. massively affects every aspect of my life. Attending school was a huge hurdle for me and one I still struggle with. There were weeks at a time I was physically unable to attend school.

Ellyn Gould.

“Eventually my attendance was so low the deputy head and head of welfare came to my house one morning.

“The teacher was fully aware of the reason I was not attending, she suggested that I take away my phone and bedroom door and if this did not work get me sectioned.

“This moment was the first time I was made to feel that M.E. was my fault or in my head. My mum was eventually forced to deregister me from school due to the school threatening prosecution.

“It’s difficult to accept I don’t have a normal life and it’s hard to see a future where M.E. doesn’t control me, but I stay optimistic.

“I am not the only M.E. sufferer out there and there are people going through a harder time than I am.”

The ME Association

Please support our vital work

We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.

If you would like to support our efforts and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.

Just click the image opposite or visit our JustGiving page for one-off donations or to establish a regular payment. You can even establish your own fundraising event.

Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive ME Essential – quite simply the best M.E. magazine!


ME Association Registered Charity Number 801279


ME CONNECT HELPLINE

0344 576 5326

Available every day of the week between these times: 10am - 12noon, 2pm - 4pm and 7pm - 9pm.

Calls cost the same as other standard landline numbers (starting 01 or 02). If you have a call package for your landline or mobile phone then calls will normally come out of your inclusive minutes.