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Support for M.E.

192. Jill Moss

A retired teacher from Milton Keynes set up the UK’s largest charity for children and young people with Chronic Fatigue Syndrome.

10 Downing Street

Dr Jill Moss, 72, set up the ‘Association of Young People with ME’ (AYME), in 1996, having suffered with the disease herself for four years. The charity has since helped over 9,000 young people living with the condition.

Chronic Fatigue Syndrome or ‘ME’ causes a wide range of symptoms, including intense tiredness, aches and pains and can make it very difficult for people to concentrate or perform everyday tasks easily. Symptoms can come and go and vary from person to person. Some people are only mildly affected while others struggle to manage normal school or working hours and may have to cut back a lot on their social life. A small percentage of patients have to stay in bed and aren’t able to look after themselves or eat properly.

Jill experienced exclusion and isolation first-hand during her illness and felt particularly concerned about the affect it must have on young people with the condition. Meeting some and hearing their stories inspired her to write a self-help book called ‘Somebody Help ME’ and set up the Association of Young People with ME charity in 1996.

Jill recruits volunteers who have ME themselves, helping both those who need immediate support and those on the path to recovery who need work experience to enter the working world.

Through Jill’s efforts, the Association of Young People with ME has been able to provide support and information to children and young people up to the age of 26 who might otherwise have suffered in silence. Thanks to Jill, the charity now reaches an enormous 9,000 out of the estimated 25,000 young sufferers and recruits over 65 volunteers, all of whom live with ME themselves. The charity facilitates local meet-ups for sufferers and, for those who are too ill to leave their homes, online messaging boards and a ‘buddies scheme’, where ME sufferers exchange letters and emails to share their experiences.

Jill’s efforts have already been recognised by a number of organisations. She has won the Childline Award for services to children, the Whitbread Volunteer Action Award, an Honorary Doctorate from the Open University and now the Prime Minister’s Point of Light Award.

Prime Minister, David Cameron, said:

“For many young people living with Chronic Fatigue Syndrome, Jill’s efforts are life changing, providing an empathetic ear and a crucial link to the outside world. Not only does Jill’s work directly helped those in need of support, but she is also giving people the chance to empower themselves through volunteering. I am delighted to be awarding Jill with a Point of Light.”


Jill said:

“This is a real honour. It’s not easy to get the time to step back and take a look at what has been achieved when there is still so much to do to break through the misunderstanding that plagues this illness. I thank all concerned for this award and hope that it may be an inspiration to others that if you keep battling on, amazing things happen.

Dr Jill Moss’s local MP, Mark Lancaster, said:

“Jill is clearly a very special lady, who, through her own adversity has been able to provide support for those in a similar situation and I am delighted that she has been able to make a significant difference to so many young people.”

The daily Points of Light award recognises outstanding individual volunteers - people who are making a change in their community.

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