How many young people have to die before 'chronic fatigue syndrome' merits properly funded research? Guardian.co.uk 30/03/12 Scott Jordan Harris
On Sunday 18 March, Emily Collingridge, a beautiful 30-year-old activist and author, died after she was apparently no longer able to struggle against the chronic illness that had afflicted her since she was six. Major news organisations have all but ignored her death – the death of a noteworthy campaigner while suffering from the very condition she tried to persuade the world actually existed – just as they continually ignore so many important stories about the illness she had.
That illness is a neurological condition called myalgic encephalomyelitis or ME. There are many who think it is not real and many others, even within the medical profession, who think it is a psychological condition best treated with enforced exercise, which only worsens its effects. Even those doctors and lay people who acknowledge the illness often refer to it by the ridiculous name "chronic fatigue syndrome", which is almost as damaging to ME sufferers as the symptoms we suffer.
Remarkably, she was – in her healthier periods – able to write a book called Severe ME/CFS: A Guide to Living, which is an invaluable text for many ME sufferers. It is published by AYME, the Association for Young People with ME, of which Collingridge was a prominent member. Her most important work, though, was her appeal for adequate biomedical research into ME.
Collingridge was a great light for thousands of victims of severe ME whose lives pass in almost total darkness. It is essential that her tragedy is not overlooked. We must all understand that the cause she championed in life – the urgent need for proper recognition of, and research into, ME – is made even more urgent by her death.
COMMENT by Hazel Econs Director Allergy Medical UK
We frequently treat patients suffering with ME. Our aim being to identify the root cause.