John Siddle, PR Manager, ME Association.
Two teenagers hit with the devastating disease M.E. today revealed the brutal realities of living with the catastrophic condition.
Manifesting as unrelenting fatigue and profound pain, ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is destroying the lives of 250,000 people in the UK, including children and teenagers.
- Daily Mail ‘Teenager is left battling chronic fatigue after a parasite burrowed into her EYE: 19-year-old claims the bug was in tap water which ended up on her contact lens and could now kill her‘
- Daily Mirror ‘Girl's life ‘ripped to pieces' after parasite found in tap water burrows into eye where it is now sleeping‘
One in four are so severely affected that they are rendered housebound or bedbound – with some even reliant on tube feeding.
Sufferers 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 remain vast misconceptions.
Severe ME Day
Today is Severe ME Awareness Day and campaigners and patients, too long hidden behind the closed curtains of UK homes, are fighting back, more vociferously than ever before.
Two teens today told of their horrendous experiences with the condition – the shocking reality of a disease that, even in medical circles, cynics still believe is ‘made up', ‘in the mind' or even ‘laziness'.
At her worst, she was unable to lift her head from her pillow, was spoon-fed and unable to sit for more than 30 minutes without fainting.
She said: “ME has changed my life. I can't sleep in my bedroom, instead in a downstairs room. I'm sensitive to lights and sounds, so regularly wear sound reduction headphones and sunglasses – particularly on bad days.
“People don't tend to see the bad days, the days when I'm crying in pain, when I'm too exhausted to wear ‘proper' clothes, and the help I need from my parents with washing myself.”
The teenager now has a bedroom on the ground floor of her parents’ home because she is often too weak to make it upstairs.
M.E. leaves Rosie in a wheelchair and unable to walk or stand unaided.
“I still don't have the strength to stand or walk and I haven't attended school since 2014,” she added.
“I have a very good support system around me who understand my illness, however I have lost contact with people I used to talk to every day and friends who I grew up with.”
Her friends have gone off in different paths and she “just exists”. She said: “This fatigue is like no other.
“I actually wish there was another name for it. There is nothing I would give more than to transfer my symptoms to another person for just an hour.
“The fatigue we feel is like a thousand bricks being tied to your body. You can’t muster up the energy to put on foot in front of the other.
“You can’t get dressed and ready for the day without a blackness descending over your eyes. You can’t carry a conversation let alone even speak.
“The bottom of the line is that there is no energy there in the first place to channel through your body to all the right places. The only thing you can do is lie-down and exist.”
The ME Association
The ME Association is at the forefront of improving access to care, treatment and research and removing the disease's stigma.
“It can feel like a constant flu, the smallest exertion can floor us, our bodies are painfully sore, restful sleep eludes us, light and noise are intolerable, and ‘brain fog’ causes confusion.
“M.E. remains a hidden disease. There is no known cure and no effective treatment – and it can lead to greater functional impairment than multiple sclerosis or cancer.”
Merryn Crofts from Rochdale was just 21-years-old when she died after a six-year battle against M.E. Her death was among the first to be recorded as being from the disease.
In addition to excruciating hypersensitivity to touch, light and sound, the Oulder Hill pupil also suffered from severe migraines, brain fog, slurred speech, agonising stomach problems, and difficulty swallowing.
Her weight plummeted to just five-and-a-half stone (35kg) and she was also given a feeding tube, which had to be stopped after her stomach became too sensitive for even the tiniest morsel of liquid food.
Merryn, who was bed-bound for the last three-years of her life, was on ‘massive’ amounts of medication such as morphine and ketamine.
Her sister, Amy Williams, is now trying to improve the future for other sufferers. Amy said:
“The most severe sufferers are often the most hidden. A lot of people affected are unable to raise awareness in the way they would like as the condition is so physically debilitating and they are physically unable.
“People find it hard to understand, with the medical advancements, how something like this can happen in this day and age.
“This country is so behind America and their research.
“M.E. is truly devastating for the 25% who have severe M.E., lying in a dark room being fed by a broviac line as a last resort, paralysed with no medical services.
“They are some of the sickest people receiving the worst service. People need to take ME seriously, even though they might not have heard of it.”
For more information on M.E. or to support research through donations, visit www.meassociation.org.uk
For press enquiries, please contact our PR manager, John Siddle, by emailor by phone (07598 032 845).
You might also like to read and download our Factsheet which provides important information about M.E. that can be useful background.