Good news - or not?BMJ 1994; 309 doi: https://doi.org/10.1136/bmj.309.6956.746 (Published 17 September 1994) Cite this as: BMJ 1994;309:746
- P Cardy,
- C Hall
“I can't tell you how disappointed I am,” says Eileen as she puts the phone down after 45 minutes. “I really thought the article meant there was a treatment at last.” Eileen has motor neurone disease; a civil servant in her 40s, she cannot walk or make much use of her hands now, and her voice is badly affected. From long acquaintance with this shocking disease, I fear that she has only weeks to live.
Eileen has been in one of the drug trials of nerve growth factors from some months, and she read the Daily Telegraph's piece, “Motor neurone treatment hope” on 19 August, reporting a trial in the United States in which experimental mice were given two different factors, which seemed to slow down the disease. One of them is the drug she is taking. Tonight I explained that the mice do not have human motor neurone disease but a genetic disorder that mimics it. There will probably be a new round of trials before this cocktail can be used on people; neither factor is yet licensed for prescription. We both know it will come too late for her.
In previous discussions I have tried to tell her that nerve growth factors will not suddenly regenerate her dying neurones; that by taking part in the trail she is a volunteer in a medical experiment; that we must have placebo controlled trials to establish whether it is the drug or her (or her doctor's) hope …