As some of you will be aware the a resolution about LDN was raised and passed at the MS Society AGM.
We obviously now await the review by the MS Society. We however note the formal responded to NICE over the fingolimod decision that NICE should take into account the views of those with MS. It is therefore our hope that will be consistent and take into account patient surveys on LDN and the presentations by doctors at the various medical conferences in their review.
Details are on the Wareham and Purbeck MS Society branch website.
Sorry for the delay in posting this information but from London we went on to tour Wales before crossing the Irish sea to go to the Dublin medical conference about LDN/ CCSVI.
The script which I read out at the AGM on behalf of Heather is below. The AGM recording is also currently on the MSS web site:-
The clinical potential of Low Dose Naltrexone was discovered around 1980. It was first used as an experiment to treat MS in 1985.
I would simply divide MS into two issues, a disease process that causes problems to occur and the resulting long term damage. LDN mainly switches off the disease process in the majority of people who use it to treat MS. It is necessary to adjust the dose to suit individual patients, normally between 1.5Mg and 4.5MG per day to achieve this result. This is the primary technical difficulty in designing clinical trails to prove benefit to licensing standards
The primary evidence for the benefits of LDN comes from the several medical conferences that have taken place since 2005 where doctors have given presentations on their clinical experience of treating patients. We are encouraged that the Board’s response has committed to publish other evidence of this type.
Sadly this treatment is based on a patent expired drug and the cost of clinical licensing trials is astronomical compared with research funding available outside the pharmaceutical industry.
Most treatments routinely prescribed for MS are not licensed for MS - a process referred to as off label prescribing. LDN is just another one of such treatments in widespread use.
The post code lottery system is unfortunately alive and well with PCT funding of LDN much like it is with all other treatments for MS licensed or not.
Even if you can’t persuade your own doctor to prescribe LDN it is still available from many doctors privately from around £300 a year including prescribing costs. It is therefore one of the few treatments available to almost all who wants to try it.