I opened this thread for one reason and that was because we were effectively taking over a post about adjusting the dose of LDN with what is a much wider debate about evidence based medicine.
Let me however, since you ask ,give you my views on Tysabri and any other treatment with significant risks.
Top of them all, these decision should be made by the person who is sick.
Doctors should facilitate such decisions by giving accurate information good and bad about all available options - LDN is one that is not always offered although I know that is changing slowly.
Sorry I have very little experience with Tysabri so I will use an example from campath where the 2 or 3 I have spoken to have obtained very significant results of reversing MS to an extent and effectively changing their lives. Campath seems to have about the same risks as Tysabri.
Once I had got to that point with any treatment I doubt I would willingly swap it for anything, clearly MS is not a game and it is worth taking some risks to deal with.
LDN is sensitive to me in that all available evidence suggests that if my wife had been told about it in 1986 when she was diagnosed then she would not now be sitting in a wheelchair.
So what about treatments with risk.
Clearly in my view people should be allowed them but I do not feel licensing is the appropriate route. Licencing should mean safe, absolutely safe is of course not an available option but at present it means nothing like safe. There should in my view be a separate category for proven with known risks.
Once a PCT has allowed a treatment they should commit to long term provision for those they give it too. I am aware, again from campath, of people who have been given it found it works then due to a change of policy related to licensing taken off it. Who knows, similar things may happen with Tysabri probably based on money.
You then come to the cost issue, it can not be ignored. Do you offer a proven but slightly risky treatment to a few or a less proven but safe dirt cheap treatment to many? This is where I see the current system breaking, we just can not afford it. For most people with MS it was broke from the moment the first licensed treatments came on the scene. When we come to evidence then clinical trials have their place. However once a treatment is in widespread use and I think you could now say both LDN and CCSVI treatment fit into that category then science should collect achieved results, it is the only way to get long term data anyway, you can not run 20 year double blind trials.
Who funds it well clearly you can not expect the drug indusry to fund anything except for commecial gain, however in this country why not the NHS, they always say they are short of money why will they never investigate cheap treatments.
In my view the current system favours the drug industry far more than the patient. There is nothing wrong with deriving profit from making people well but at present too many effective treatments are being ignored because of an over biased system in favour of the money. It will and is changing and the main catalyst is the web.