Gifts to make severe ME sufferers smile posted in Merryn Crofts' memory by Smile for ME charity
Date published: 13 May 2021
Merryn's Smile Day in honour of Merryn Crofts
Thirty ‘Smile’ gifts have been posted in Merryn Crofts’ memory to fellow severe ME sufferers.
Merryn, of Norden, sadly died in 2017, just days after her 21st birthday following a six-year battle against Myalgic Encephalomyelitis (ME), a neurological illness which can cause immense and insufferable pain and affects approximately 250,000 people in the UK.
Merryn is just one of two people and the youngest in the UK to have a cause of death attributed to the devastating disease, which has been cruelly dismissed as ‘laziness’ for years.
Taking place on 13 May – Merryn’s birthday – Merryn’s Smile Day was created in 2019 with her family’s blessing by the Smile for ME charity, which has sent gifts – called ‘Smiles’ – to severe ME sufferers and their carers.
Since 2019, 94 Smiles have been sent in Merryn’s name. The presents are not wrapped as opening presents with severe ME can be difficult in many ways. The Smiles have included balloons, teddies, cosy accessories, flowers and pamper sets together with a rose quartz heart.
Alice Wright, a friend of Merryn’s who set up Smiles for ME in 2012 after herself being diagnosed with ME, said: “Merryn loved sending little gifts and also loved it when happy post arrived for her so we are glad to be able to do this in her memory.
“We send personalised presents, which we call Smiles, to those affected by ME to brighten their days and let them know someone cares. When you are confined to your bed or house and are unable to participate fully in life, receiving a parcel in the post can give a reason to smile and remind you that you are not alone.
“As Merryn is the reason this all happens we include some of her favourite things and each Smile is packaged with love which she radiated.”
After having swine flu in 2009, Alice didn’t fully recover and was then diagnosed with ME which she found 'very isolating and lonely'. No longer able to do basic daily tasks or things she loved, she turned online and found solace in a community of people going through similar things. It was here she became friends with Merryn and the girls became pen pals.
“We became pen pals which was when I realised just how special getting a letter through the post was. It was contact from the outside world and it always made my day. I was determined something good would come out of having ME and I just wanted to make others smile,” Alice continued.
“Merryn and I bonded over our love of flowers and girly things. We would send each other cards and little presents and she always made me smile. When she very sadly passed away, I knew I wanted to try to do something to help remember her which was when Merryn’s Smile Day was created in 201, thanks to her family’s blessing.”
Merryn’s mum, Clare Norton added: “We love that Alice honours Merryn in this way, and we know it would make Merryn smile too.”
ME affects 250,000 people in the UK and presents as an exhaustion so severe that it leaves people, at best, struggling to work, and at worst, leaving sufferers to endure a tortuous existence, a 'living death', where they are unable to take their place in society.
People living with ME have been disbelieved, stigmatised and told it’s ‘all in their heads’ – despite one in four being so severely affected that they are housebound, bedbound, and in some cases, unable to shower, clothe, or feed themselves.
Since 2012, the government has invested an average of £558,333 each year into ME research – just £2.23 per patient, per year.
Despite being recognised by the World Health Organisation as a neurological disease, and a report from the Chief Medical Officer of Health calling for more research and a network of hospital-based clinics, many doctors still don’t know how to diagnose and manage ME.
Lack of research means that there aren’t any effective forms of treatment, despite quality of life studies revealing the level of disability experienced with ME can be just as great as many other serious medical conditions, including cancer and multiple sclerosis.
While some people with ME do improve over the course of time, it is only a small minority that return to full normal health.
Smile For ME’s main aim is to make those affected by the illness smile and to raise awareness of Myalgic Encephalomyelitis.
To find out more and to nominate an ME sufferer or their carer for a Smile, please visit: www.smileforme.org.uk.
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