Mary Bradley books; researching LDN furthur

 I've just finished reading this book about LDN. My Dad got it for me for Christmas. Its written by a woman called Mary Boyle Bradley whose husband suffers from Primary Progressive MS and has been on LDN for about nine year. This has happily stopped his MS from progressing. Her Uncle, Mum, herself and various friends also have been on it for conditions as wide ranging as cancer and Samters.

It was a good read from the perspective of learning about someone elses experiences of it and I learnt some interesting new facts about LDN.

She is a very uncritical woman which is both a blessing for the book and a slight negative. She isn't very zealous in her critisim of the MS charities and governments who don't champion LDN because they're in cahoots with the pharmaceutical companies. (I have to confess it was pleasant to discover ME charities aren't the only ones who let down their members because of their involvment with government agencies and pharmaceutical companies.) She believes the reason they aren't interested in peoples experiences or the Irish government with funding a large scale clinical trial of LDN because they think it sounds too good to be true.

Basically Naltrexone is an out of patent drug that was once used, at a higher dose of 50mg, to treat drug addicts and achololics. In 1986 a New York doctor, Dr Bernard Bihari, discovered that some of his drug abuse patients who were suffering from a mysterious disease later discovered to be AIDS benefited from a lower dose of this drug (4.5mg.

Breif quote from the low dose naltrexone.org website on how its supposed to work;

' A body of research over the past two decades has pointed repeatedly to one's own endorphin secretions (our internal opioids) as playing the central role in the beneficial orchestration of the immune system.  Preclinical evidence indicates overwhelmingly that opioids alter the development, differentiation, and function of immune cells, and that both innate and adaptive systems are affected. The brief blockade of opioid receptors between 2 a.m. and 4 a.m. that is caused by taking LDN at bedtime each night is believed to produce a prolonged up-regulation of vital elements of the immune system by causing an increase in endorphin and enkephalin production.'

However there have been few studies into LDN because drug trials are mainly initiated by large pharmaceutical companies who have to, in the interests of their businesses, keep the likely financial rewards in mind. As Naltrexone is a cheap drug that already has a patent the financial rewards would be few.

Mary Bradley attemped to lobby both the Irish (her home country) government and the South African government because MS, AIDS, etc and their treatment put a bigger pressure on those countries economys than they do on the Americans due to the NHS and the AIDS epidemics. However so far both governments have failed to act (probably because they are reliant on the drug companies).

I'm not sure exactly how LDN benefits ME sufferers as so little is known about ME at all, never mind the effects of drugs on it.

Onw disappointing point of the book is that the only CFS sufferer who took it(it didn't say ME) wasn't particularly improved by it and quickly gave up on it when she became pregnant. However her chronic fatigue was probably the result of her Samters, rather than classic ME. If we are to make any progress in the treatment of ME we desperately need a proper diagnosis for it. The problem with doing any research into it is that its diagnostic criteria is mostly phony so almost anyone suffering with anything could be thrown in. If someones fatigue was caused by say, a phyciatric problem, then LDN might not really help them. I've been asking on FF how many people would be interested in a clinical trial of LDN. The answer so far, 11 yes, 1 no, 3 not bothered.