Re: Re: MS Societies, and how to handle old drugs with new uses

[Guest guest]

Hi Friday.

I have just started writing the Canadian MS Society and the Alberta MS Society. They acknowledged the info I sent, and one lady seemed really interested. We shall see. But one wonders - does anyone there ever look at the Internet to see what is going on beyond their nose? But to be fair, they work really hard, and who knows, maybe they really DON'T have time to go surfing. Maybe as a suggestion we might mention the use of a part timer or volunteer to do just that - research the web on a continuing basis and reporting back on what's new. Might make the monthly magazine a little more interesting.

My personal experience with the Alberta MS society has been quite satisfactory. Great people, trying to help as best they can. But it is the Canadian Society that I am really interested in. Again, we shall see what we shall see.

As for naltrexone somehow having a "bad" reputation, I still haven't run into anybody - doctors included - who seem to know much about it at all. I guess all us Canadians are so good that the problems naltrexone are supposed to help never happened here. Ahem.

Maybe a little bit of ignorance is a good thing?

Tom from Edmonton

----- Original Message -----

From: Friday

low dose naltrexone

Sent: Monday, May 10, 2004 5:23 AM

Subject: [low dose naltrexone] Re: MS Societies, and how to handle "old" drugs with "new" uses

Tom, the MS Societies hear in Australia are neutral in responses to anything new, and they even give us a 'coping mechanism' in the form of a statement to say to our well-intending friends and families who hear about new things on the grape vine. The statement is to say, "Thankyou for your concern, but there is NOT cure or quick fix to MS as yet, and if there was, the MS Society will inform us if they have proved somewhat successful in clinical trials. Until then, please so not bother me with un-trialled treatments" (or something to that effect) Most of us with MS are conditioned to ignoring anything new that our Neurologists haven't heard of and suggested. God know's I've done that long enough, but I never gave in to the ABCR drugs - they didn't interest me. At the same time, I felt guilty for not taking them. This is why I have had a hard time introducing other people with MS to LDN. The first things they ask are "If it's so good for so many people and being used for so long in the US, why havent we heard of it?" or "Why hasnt the MS society heard of it? "Why hasn't it been clinically trialed?"Meanwhile, they dont question any of the Parkinson's treatments for MS, like Amantadine? Or the Cancer treatments for MS, why? Because Parkinson's and Cancer are 'respectable conditions' in our society. Heroin and Alcoholism has a bad stigma, and so does Naltrexone for being associated with it - that's my theory.Friday> Seems like a dumb question, but where do MS societies come from in the first place?> > And I would suggest that all are not good, or all bad, but depend to a large degree as to who is runnung them on an individual basis. I wouldn't want to throw the baby out with the bathwater, perchance.> > Unfortunatley, solving the riddle that is MS is going to take the eventual cooperation of a number of people, and not all of these people are going to necessarily have the same goals.> > One standard problem that is going to be have to be addressed - and not just by MS people - is how to cope with funding clinical trials regarding "old" inexpensive drugs - like LDN - which are now finding new uses. And it seems, despite the legitimacy of "off label" use, many doctors are refusing to try anything "new" for which there have not been specific clinical trials. Somehow I see the hands of insurance companies at work here, and the tremendous liability doctors may face if they somehow do not tow the lines drawn by these insurance companies.> > I am interested in hearing what you have to think of the matter.> > Tom from Edmonton You can call directly at tomhfl@t... if you would like.> > Bye