One morning in 1966, I woke up seeing double. I splashed cold water over my face and blinked a few times but I still saw double. I had had glandular fever the previous month, for which there was no treatment except rest and paracetamol, and the GP said in time it would cure itself — and though tiredness dragged on I was soon back to normal.
But now I began to ache all over again, my temperature was up, glands swollen, and when I lay down I went to sleep for six hours. The GP was confident that, double-vision apart, mononucleosis had returned in a mild form, but asked me if I was experiencing anything unusual. I said my head was full of boiled socks, I could not concentrate or focus, let alone work, and when I tried to read, the letters moved around and jumbled in front of me. He looked nonplussed. Had I noticed anything different in my surroundings? ‘I had my flat redecorated and there’s a weird smell in the air all the time.’
Maybe he was on the verge of sending me to a psychiatrist, but instead he prescribed more rest and paracetamol, plus an optician’s appointment. I went home and slept for 11 hours straight. When I woke, I was back to normal — no double vision, exhaustion, aching, temperature or boiled socks, and the words stayed still on the page. Normality lasted for three weeks before it all came back, and much worse. I could not walk down the road without wondering if I would have the energy to get back. I had a permanent temperature, I ached, my brain was mashed potato and the double vision had returned.
There followed visits to the optician, another doctor, the hospital eye department and, like Tony Hancock, I gave an armful of blood, but all tests were negative. Someone muttered ‘Royal Free disease’ but then ‘Multiple sclerosis’, which typically starts to affect women in their twenties and thirties. Double vision can be an early symptom, so I was sent to the neurological hospital in London’s Queen Square, where, after I had walked down a line chalked on the floor several times in front of several doctors of escalating seniority, had my knees tapped with many a rubber hammer and had lights shone into my eyes, they diagnosed ‘post-viral syndrome’. No treatment, no cure. ‘It will just go away by itself.’
It did. Then it returned, then went, then came back, worse each time, intermittently for two and a half years, which in my young life was time I had to write off, though during remissions I lived and worked more or less normally, even managing to write two books.
But I could never predict the return of the damn thing, never plan anything. It always started with double vision; and any form of stress (even good stress) — menstruation, a cold, friends to dinner, being in love, having an argument — brought on a vicious bout. I despaired of ever getting better, could not imagine a future in which I could make plans or be sure of keeping them.
Occasional articles began to appear in the media about this thing, which was now usually called ME, and the writers almost always concluded that it was psychosomatic, mainly because all physical tests proved negative. Various friends and some well-known people — the film director David Puttnam, the yachtswoman-turned-novelist Clare Francis — owned up to having it and said it had ruined their lives for weeks and months, and even years. Melvyn Bragg said that ME had stolen his daughter’s entire youth.
But I was to have some youth left, after all, and the end came rather dramatically. During the move to my new home 20 miles away, I had the worst bout ever. A friend had to drive my car because I could not see properly, and I ended removal day hardly knowing where I was, too exhausted to stand and dreading the future weeks of illness.
They simply did not happen. My symptoms had vanished the next day, never to return, and although I had many other illnesses and life-events which would once have triggered a bad bout, I have remained free from one for 50-plus years, without treatment or explanation. I have a hunch, based on reading some research papers, that the toxic paint fumes in my flat played a part, as did the smell from a nearby chemical factory — and glandular fever was almost certainly the principal trigger. Otherwise, and whatever you call it, the syndrome remains a mystery.
Have I been describing long Covid? My elder daughter had that, and from her account, it certainly seemed like a milder, shorter-lived version of my old syndrome. How many others will suffer for two and a half years, or even more, before it too goes away, never to return? Research into ME has gone on for half a century but, cynically, I doubt it will bear much fruit — though the rise of the long Covid variant may see more funding put into it.
If you or someone you know has it, then beware the snake oil salesmen, into whose pockets I poured far too much money during my ME years. But at the risk of sounding like one myself, I know that intravenous magnesium can help, and certainly does no harm. Otherwise, the only lifebelt I have to throw to you is that it really does cure itself. Eventually.
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