US Edition Dr James Le Fanu is delighted by the outcome of an informal trial to treat chronic fatigue syndrome
It is gratifying,of course, to hear from readers who have been much helped by some observation or remedy that has featured in this column - but what follows is in a different league. Some may recall, from a year ago, the saga of the mother and daughter Cynthia and Sarah Floud, from north London, both afflicted for several years with that most unpleasant of illnesses, chronic fatigue syndrome.
For Cynthia Floud (the erstwhile director of an adoption agency and a Justice of the Peace), it started on a walking holiday in Skye, when she contracted a viral illness, after which she spent the next 10 years “lying in bed listening to Radio 4, unable to read novels as it tired me too much”. The severity of this fatigue is difficult to comprehend: imagine that you have just caught flu, you then drink copious amounts of cheap whisky, spend the day doing hard physical labour, stay up all night, go to bed and set the alarm for three hours’ sleep...
How you might then feel conveys some sense of the experience of chronic fatigue, day in day out, for years on end. Then, on top of that, there’s a whole range of other nasty symptoms: sweeping muscular pains, hot and cold sweats, chaotic sleep patterns and so on. The prevailing medical view towards this life-crushing illness is certainly more sympathetic than in the past, when doctors would ignorantly dismiss it as being some form of hysteria or hypochondriosis.
None the less, the cause remains elusive and treatment most unsatisfactory. The symptoms strongly point to some devastating disturbance of brain function which, theoretically, might be influenced by antidepressant drugs that boost the levels of the neurotransmitter chemical, serotonin. Regrettably, those with chronic fatigue develop severe side-effects with this class of drugs, so they are not routinely prescribed. Thus, the therapeutic emphasis remains very much on encouraging sufferers to think more positively about their misfortunes and stay as active as possible.
This can certainly help a bit, but, perhaps understandably, not very much. That, at least, was the situation for the Flouds when, by chance, they fell into the hands of Dr Ian James, of the Royal Free Hospital in London. He believed that the notion of boosting the serotonin levels with antidepressant drugs to be correct in principle but felt it might be possible to bypass the problem of severe side-effects by starting with a tiny dose of a drug called sertraline and slowly increasing it.
Mother and daughter agreed to give it a try. Nothing happened for eight weeks. “Then I awoke one morning feeling I had slept heavily, just like I used to do before I was ill,” says Cynthia. Sarah followed suit a week later. This was no miracle cure,and it would take nearly five years before they could again ride their bicycles through Regent’s Park.
But Cynthia Floud, being the sort of woman she once had been and had now become again, would not let it rest there. Clearly, many others with chronic fatigue could have their lives transformed just as hers had been by this special regime of sertraline. So, last November, she wrote seeking publicity for her cause. In turn, I suggested that readers of this column with chronic fatigue might ask their doctors to prescribe sertraline and then let me know the outcome by filling in a brief questionnaire.
Twenty-seven readers responded - and the interesting results are as follows. For 10 people it has made no difference or, despite starting at a low dose, the side-effects (grogginess, nausea, anxiety) were too unpleasant for them to continue. A further 10 are convinced that there has been a definite improvement in the severity of some, if not all, of their symptoms.
This leaves the remaining seven, who are astounded at how much better they are. They report not just the restoration of their energy levels to near normal, but also a virtual elimination of all their other symptoms: poor memory, mental confusion, aching limbs, malaise after exertion and so on. “It has changed my life,” says a 59- year-old woman from south London.
“Hopefully, I can begin to enjoy my life again,” writes a 69-year-old from Stockport. “I have got my life back,” says a 27-year-old from Lancashire. “I used to cycle from Leeds to York and back, a distance of 50 miles,” writes a 53-year-old man. “For a long time I thought I would never be able to do that again. Yesterday I did.”
It is all most gratifying.