ME Association Press Release by John Siddle, PR Manager.
Real People. Real Disease. Real M.E.
Hidden for too long behind closed curtains, sufferers of the cruel and unrelenting disease M.E. are bravely speaking out during ME Awareness Week (6-12th May) in the hope of ending the ignorance, improving medical care and seeing an increase in biomedical research funding.
The disease manifests as post-exertional malaise, unrelenting exhaustion, muscle fatiguability, profound pain, sleep and cognitive dysfunction as well other symptoms that combine to drastically reduce a person’s ability to function.
This often-misunderstood disease M.E. (Myalgic Encephalomyelitis/Encephalopathy) is destroying the lives of 250,000 people in the UK and is the commonest cause of long-term absence from school.
One in four people are so severely affected that they are rendered housebound or bedbound – with some being reliant on 24-hour care.
They are often confined to their beds, unable to walk, are extremely sensitive to light and sound and can require tube feeding.
Even minor exertions – such as talking, reading, sitting up in bed or trying to stand can result in worse symptoms and trigger relapses.
There is no known cure or effective treatment and worse still, there remain vast misconceptions – even in medical circles – that M.E. is ‘made up', ‘in the mind' or even ‘just laziness'.
This is despite a wealth of research evidence to the contrary and recognition by the UK Government, National Institute for Health and Care Excellence (NICE) and The World Health Organisation (WHO).
|“To look at these people – men, women, children – and to read their individual tragedies only further serves to ask the question: ‘Why is M.E. still not being investigated with the urgency it so obviously requires?'”|
“We want to tell the world about the Real People that suffer because of this Real Disease – day after day, week after week, year after year, and in some of the cruellest cases, decade after painful decade.”
Neil Riley, Chairman, ME Association.
Less than £1 is spent each year on medical care for people suffering from M.E. and there is a chronic lack of central funding for biomedical research. Many doctors still don’t know how to diagnose or manage the condition.
Parliamentary debates led by Carol Monaghan, MP, have served to raise awareness of the key issues but more action is urgently required. The devastating effects of M.E. have led to a documented risk of suicide that is well above average and deaths from M.E. have been recorded.
Real People. Real Disease. Real M.E.
This week, national campaigning charity the ME Association is presenting the Real faces of hundreds of M.E. sufferers – all wanting to demonstrate how this Real disease has had such a devastating impact on their lives and raising issues that they feel are most important.
The ME Association is at the forefront of improving access to care, treatment and research and wants to see any remaining stigma removed once and for all.
|“M.E. remains a largely hidden disease. There is a lack of medical care and no effective treatment – and yet it can lead to greater functional impairment than multiple sclerosis or cancer.”|
“The most severe sufferers are often the most hidden. A lot of people are forced to give up and they can’t continue the fight to raise awareness and try and improve the situation. There’s a higher risk of suicide within the M.E. community.”
“People find it hard to understand how something like this can happen in this day and age. We desperately need greater recognition and acceptance, improved medical care and more biomedical research to give people a fighting chance of reclaiming their health; and once again becoming productive members of society.”
Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
MILLY LOWSLEY, 13
Milly Lowsley, 13, is effectively housebound with M.E. – but two years ago the keen hockey player was a whirlwind. She has now been out of school since May 2018 on medical grounds.
|“Physically, it’s like having weights on you all day long, or sprinting while having the flu.”|
Milly, from from Aberlady, East Lothian, said: “I just want people to try and understand how cruel this illness is.”
“I’m overly-sensitive to light – so it can feel like my eyes are burning. Sometimes, someone talking can feel like air horns.”
“My mind is always foggy – once I forgot my own birthday, and I can’t eat well.”
“The worst thing is that trying to push through it will make it worse.”
“If you could feel death, I’d say it’s living with this, but having to feel it every second of every day.”
HANNAH GRUNDY, 36
Hannah Grundy, 36, from Nottingham, was diagnosed with M.E. in her late 20s, just months after starting a new job with data giant Experian in 2011. She is now essentially housebound. She said: “M.E. makes you realise what is important in life.”
|“I often feel like a 100-year-old trapped inside a young person's body.”|
“Just as you come to terms with things you get a little glimmer of hope in the form of a slight improvement but then things go back to how they were before or worse, and you have to start all over again.”
“I often feel like a 100-year-old trapped inside a young person's body. My 93-year-old my granddad is more able than me much of the time – and that's after pneumonia, lymphoma and a broken femur in the last year alone.”
Several quality of life research studies have shown that the level of disability in M.E. can be just as great than many other serious medical conditions, including cancer and multiple sclerosis.
While some people with M.E. do improve over the course of time, it is only a small minority that return to full normal health.
NICOLA INGRAM, 41
Nicola Ingram, 41, is a former TV sports producer for the BBC and Sky from Birmingham. She is a single parent to her 14-year-old daughter.
She said: “When you see people out who have M.E. out or even out, out it means they’re having a really good day.”
“Most days you don’t see them as they’re in bed or on the sofa in pyjamas with hot water bottles and blankets sporting tremendous bed hair because they haven’t got the energy to comb it.”
|“That’s M.E., that’s me and my army most days. Invisible to most. The millions missing from society.”|
Less than £1 is spent each year on people suffering from ME and there is a chronic lack of funding for medical research. Many doctors still don’t know how to diagnose or manage the condition.
A parliamentary debate last year was told how people with M.E. are more than six times likely to commit suicide.
HAYLEY DATE, 45
Hayley Date, 45, from Bridgwater, Somerset is also effectively housebound with M.E.
|“I feel like I am a prisoner trapped within a body that just doesn’t work anymore. It is living hell every day. My mind wants to do things, my body just won’t let it.”|
Hayley, mum to Harvey, 15, who also has M.E., and Ella, 10, was struck down on New Year’s Day in 2015 while sales shopping but was only diagnosed months later.
She said: “It is a constant battle every minute of every hour of every day not knowing whether you will be able to do something.”
“I have become lonely, isolated and not able to do so many things that I used to. Plans can never really be made because I haven't got a clue whether I will be well enough.”
“I now live my life mainly housebound. The same four walls day in, day out, drain any positivity you can try and muster.”
|“But I don't want or need your pity, I just want your understanding.”|
It is incredible to comprehend that some doctors still refuse to accept M.E. as a real medical condition, despite published research to the contrary and the countless stories of intense physical debility.
GEMMA CORVALAN, 31
Gemma Corvalan, 31, a talented artist from Cambridge, was diagnosed with M.E. after a car crash in 2011.
She said: “A lot still needs to be done, mainly amongst GP’s who still doubt the veracity of our symptoms and generally doubt patients and dismiss our struggles.”
“I have had doctors tell me to drink more coffee, in a very dismissive way when I asked if there was anything I could do about my fatigue.”
“These are the people we entrust our lives to and look to for guidance in trying times. The only way to combat this type of problem is by highlighting the realities and the struggles people with M.E. go through.”
|“If a doctor cannot accept our illness, there is no hope anyone else, including sufferers themselves, will.”|
The ME Association is at the forefront of improving access to care, treatment and research and removing the disease's stigma.
The ME Association
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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.
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