ME is often dismissed – but sufferers like Emily Collingridge are dying | | 30 March 2012

March 30, 2012

From ‘The', Comment is Free, 30 March 2012 (words by 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.

Fatigue is what a person feels after a hard work day or an intense session at the gym. It is a gentle tiredness that makes the back ache slightly and the eyelids a little heavy. It is cured by a nap or a reviving espresso. Collingridge was beyond bedridden. She was crippled by incessant agony and dependent on morphine. She was fed through a tube and her body couldn't cope with noise, light or movement. She was doubly incontinent and experienced periods of both blindness and paralysis.

Around a year ago, she wrote, “I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now.” She is now dead. To call the illness that savaged her “chronic fatigue syndrome” is like calling stomach cancer “chronic upset tummy”.

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.

I recently wrote a piece for the website of the Chicago Sun-Times, discussing both my history of ME and my reactions to the new documentary Voices from the Shadows. For anyone who wishes to understand the agony ME can inflict, and the dangerous ignorance endured by many who have it, the film is a must-see. One of the ME sufferers it profiles is Sophia Mirza, the first person in Britain whose death was officially listed as being caused by chronic fatigue syndrome. Another is my late friend, Lynn Gilderdale, whose mother assisted in her suicide after Lynn's condition became unendurable.

Both Mirza and Gilderdale suffered – and perhaps died – because of the unforgivable actions, and also the unforgivable inaction, of members of the medical profession. Mirza was committed to a mental institution to treat an illness that was purely physical and never recovered from the damage that did. Gilderdale, too, was referred to a psychiatrist when she needed physicians working from the results of cutting-edge studies. The question we must ask is obvious: how many young people like them, and like Collingridge, have to die before their illness is taken seriously and huge, well-focused efforts are made to cure it through properly funded biomedical research?

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.

5 thoughts on “ME is often dismissed – but sufferers like Emily Collingridge are dying | | 30 March 2012”

  1. Really great article. It gets across just how devastating this illness can be and also a sense of the incredible waste of talent caused by the current ‘establishment’.

    It seems that our governments, current and past, prefer to spend a fortune in ineffectual reforms and jobs for the cynical empire builders when biomedical research (properly carried out) would not only save a fortune in terms in benefits payments but would enable sufferers and their carers to go out and get on with their lives and careers and pay taxes.

    For this lady to have achieved so much, despite the severity of her illness, is amazing and just goes to show how inaccurate and unfair it is to dismiss this illness as ‘having something to gain from being ill’ or being apathetic.

  2. This comment by engagebrain deserves saving for a rainy day:-

    Funding research by psychiatrists, as in done in the UK, will inevitably produce psychiatric based solutions. The problem is that psychiatry has only a marginal overlap with science and the advances in our understanding of the functioning of the brain have little to do with psychiatrists. Indeed as a group their major interest is in defining as many varieties of normal bahaviour as illnessess to increase their billing potential (US driven).

    What is needed is research by scientists and non psychiatric doctors. Money has been found to research into Alzheimers, based on the costs imposed by the disease on the nation, a similar case exists for funding research into ME.

  3. I watched ‘Out of the Shadows’ and was horrified at how the psychiatric profession used sectioning under the mental health act because one of the ME sufferers had not recovered after six months. Enforced GET and CBT to raise the profile of the condition as psychologically based… And on complaining about the treatment by the psychiatrist it is then investigated by another psychiatrist who is unlikely to find in favour of the complainee over supporting the actions of a member of his own profession. This is reminiscent of the horrendous treatments suffered by those committed to mental asylums as late as the 1970’s. I trained as a mental health nurse and taught Psychology before my PVFS – I thought we were living in the 21st Century and the psychiatric model was treated with more caution.
    And then when it didn’t seem as though it could get worse – parents having their children taken into care by social services because they must be contributig to the childs lack of recovery! Where are the advocates for these victims?! It is shocking and a complete outrage.
    The medical profession and other health professionals are the people who should be watching the film – not just ME/CFS sufferers.
    ‘One Flew Over the Cuckoos Nest’ anyone?…

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