Wednesday, March 9, 2011

UK 2003: Annabel Senior died of ME/CFS yet silly psychobabble is still eating up all funds for ME research

ANNABEL’S STORY by Richard Senior:

She was born Annabel Robinson, on the 4th March 1942, eldest daughter of Squadron-Leader ‘Robbie’ Robinson, who had commanded 73 (Hurricane) squadron in the Battle of Britain. She died on 8th January 2003, 2 months short of her 61st birthday. Too young to die….

Sent to boarding school in her mid-teens, she began to notice how quickly she got tired, and how difficult it was becoming to keep pace with her peers. In spite of this, she excelled at everything: athletics, gymnastics, games, drama, art, music, and above all, examinations. So much so, that she easily achieved a place at Oxford, and only narrowly missed a First – simply because by now she was unable to work more than 2 hours out of 24, sometimes taken in the middle of the night.

She realised she would need support, from whomsoever would give it, because she now knew that she would not be able to cope on her own. She therefore accepted the first offer made to her, and was married before she graduated.

For the next 30 years, she struggled with what was easy for most people, including raising a family of three – but was never able to hold down a job of any sort, because of her crippling lack of stamina. Her first husband died, and she and I were married in 1979. So well was she able to disguise her condition, that it was some time before I realised how ill she was. Smells affected her so badly, that they seemed almost to drive her to distraction. Noises terrified her; bright light blinded her. And, worst of all, she began to abreact violently to foods, one after another.

Not until 1990 did we realise what was wrong: ME/CFS. There was some treatment about by then, but limited, and we took what was on offer. Even if it had been the right treatment, by that time it was too late: so many years of neglect, disbelief, wrong medication, wrong diagnoses; so many times referred to psychiatrists, who to a man sent her away because they couldn’t find anything wrong – with a prescription for an anti-depressant just in case….

The foods that she could eat without becoming very ill dwindled in number. She coped with this situation for 2/3 years by going on a semi-fast, say 4/5 days, and then trying again. Bit by bit the ‘good’ days became fewer, and by the autumn of 2002 there was virtually nothing left that she could eat with impunity. Her heart also began causing trouble around this time.

45 years with such a condition, misunderstood and unrecognised for most of those years, is enough. Many people would have given up long before that. Annabel NEVER gave up; she simply found that there were no ‘safe’ options left – and stopped eating altogether.

She survived for 52 days – and died at home, with me by her side. Had she been born say, 20 years later, this need never have happened. Today there is palliative treatment for this appalling illness available, but no definite cure in sight yet. In her young days there was simply nothing around.

CFS/ME seems to bring out the best in people. Annabel was an outstanding example of this, in that she poured all her available efforts into helping people, particularly those distressed or in emotional trouble of some kind. She helped many such people, who kept in touch with her till the end of her life, many years after she had ‘rescued’ them and restored their confidence in themselves, in some cases even preventing their taking their own lives. She touched many lives, even though so very many never even met her. She will be greatly missed. She was greatly loved.

This is a bald and inadequate account. There is so much more to say about this incredibly courageous and loving woman. I WILL be saying it!

29 July 2006 by Richard Senior, Glastonbury, Somerset, UK,

Your news item claims that Sophia Mirza's death was the first in the UK to be ascribed to chronic fatigue syndrome (24 June, p 7). Untrue. My wife died of CFS in January 2003, in north Wales, and the coroner entered CFS as the cause.

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