To Aegis.....

[Guest guest]

Hi again, Aegis.

I could - with proof from other independent sources such as the folks at www.paintrials.com, plus info from the FDA's original trials - argue many of your points. But I would much prefer to use my limited energy to preach to someone other than the choir.

I certainly grant the difficulty of the undertaking. But by proceeding surely but slowly, and convincing / finding "champions" within the system, I think I may at least have a small chance at changing the mindsets of at least some important folks. Ideas really do have power, if you can find the right kind of people to believe in them. Polly? Maybe.

Anyhow, wish me luck!

Tom from Edmonton

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

From: aegis_on_ms

low dose naltrexone

Sent: Wednesday, May 26, 2004 6:05 PM

Subject: [low dose naltrexone] Re: Getting to the MS societies.....

Tom, Aegis thinks life is not so simple and wishes it was. But to give you some insight as to the kind of questions that may go through the NMMS think tank, Below are IMAGINARY responses by a skeptic.> 1. LDN is safe at the dosage recommended for MS (I think there is general agreement on this?). WHO CARES WHAT A FEW HUNDRED LDN USER'S THINK ?. HOW DO YOU KNOW THAT IT SAFE ?. HAVE YOU DONE ANY TESTING ?. WHAT ABOUT TOLERANCE ?, WHAT ARE THE CONSEQUENCES OF LONG TERM NEURAL RECEPTOR BLOCKADE ?, WHAT ABOUT EFFECTS ON MENTAL ILLNESS, WHAT ABOUT EFFECTS ON OTHER ILLNESSES, WHAT ABOUT EFFECTS WITH AVONEX AND ON AND ON..> > 2. Since there is no certainty what causes MS anyway, taking something that may enhance the immune system is not necessarily a bad thing,AND HOW DO YOU KNOW THAT LDN ENHANCES THE IMMUNE SYSTEM ?, JUST BECAUSE YOU READ IT ON A WEBSITE ?. WHAT IS THE DATA ON THAT ?, HAVE YOU NOT READ OUR WEBSITE, WHICH SAYS YOU SHOULD NOT ENHANCE THE IMMUNE RESPONSE ? > > 3. There are quite a large number of positive anecdotal stories that support the use of LDN; there are very few - if any - negative stories regarding its use.NMSS DOES NOT RELY ON STORIES IN MAKING RECOMMENDATIONS. PLEASE SEE A FORTUNE TELLER FOR THAT.> > 4. Clinical studies have not been done not because somebody thinks they might fail, but because naltrexone is an "old" and inexpensive drug already available for "off label" use, and therefore there is no incentive for profit minded drug companies to spend money on clinical trials, at least as things now stand.WRONG REASON, IF LDN WOULD WORK, WE WOULD IDENTIFY OTHER SIMILAR COMPOUNDS THAT COULD BE SOLD FOR BILLIONS, WE COULD DO COMBINATION THERAPY, TO SEE IF TWO DRUGS ARE BETTER THAN ONE, E.G. C+ ldn.> > 5. According to the Internet site www.remedyfind, which is a non biased reporting format for people with all kinds of diseases, LDN is the leading suggested treatment for MS.YOU MUST BE JOKING!, YOU TAKE THE WORD OF AN OBSCURE SITE OVER OUR GOSPEL TRUTH BACKED BY BILLIONS OF $$ AND THE BEST ACADEMICS ?Tom, the reality is that if you believe in LDN, go ahead and take it. If you want your neuro to believe in LDN, show the trial data.Its as simple as that. Aegis> > They could quote facts like these, perhaps, without actually expressing an opinion, and word would circulate out to a lot of subscribers that have never heard of LDN.> > I know how frustrating it is, but developing an increasingly negative approach with the Societies isn't going to do anybody any good. We will still benefit from the Societies, and they will still exist because of us, long after the LDN controversy goes away.> > Barring all the above, what about just writing Letters to the Editor? MS publications aren't usually very large - a number of supportive letters confirming the personal satisfaction of users of LDN should be noticed and hopefully do at least a little bit of good?> > Just some thoughts.> > Tom from Edmonton