Re: Get some support from the NMSS

[Guest guest]

That is very good idea.

I think though that we have to get serious with some data collection of our own in this forum and put them into file section, have constant (monthly, by monthly) reports of how each individual is doing, yes I know there is one site which has questionnaire, we might come up with other questions. It also would be very nice if we can have some pharmacist or a doctor helping us to collect these data.

I am too long out of school and obviously probably forgot most of it I learned, but with all our heads put together we should be able to organize our research properly.

We can even ask Dr. Behari to help us to set questions, etc.

Only when we have enough data we can try to confront other places, societies, etc.

***Zora*** San Trinidad, West Indies ****** *** *

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

From: Larry Stahl

low dose naltrexone

Sent: Monday, September 20, 2004 3:09 AM

Subject: [low dose naltrexone] Get some support from the NMSS

Anybody think of anything we can do to get the NMSS (National Multiple Sclerosis Society) off their one track mind that anything the 'boosts' the immune system is bad for MSers?

I asked that question of somebody who probably was associated with Dr. Bihari and he explained that the manner that LDN works makes the immune system work more correctly so that it doesn't attack 'self'.

The only reaction I have seen from the NMSS is what I consider the unthinking, even knee-jerk reaction that if LDN boosts the immune system then it must be bad for people with MS.

I think we should be putting pressure on the NMSS to fund clinical trials rather than just dismissing LDN out of hand.

Larry

[Guest guest]

Larry,

Your absolutely right, however have you taken a look at the NMSS board of directors? The majority of them are doctors, I'm not saying it can't be done, it's going to make it that much more difficult unfortunately. Here is an idea though. . . the last thing NMSS wants is bad press. If someone has a connection with the press (a big connection) that can ruffle some feathers. I've tried on a local level with little success.

Good luck, we're going to have to pull together. A powerful force comes in numbers!

From: Larry Stahl [mailto:larry@...] Sent: Monday, September 20, 2004 3:10 AMlow dose naltrexone Subject: [low dose naltrexone] Get some support from the NMSS

Anybody think of anything we can do to get the NMSS (National Multiple Sclerosis Society) off their one track mind that anything the 'boosts' the immune system is bad for MSers?

I asked that question of somebody who probably was associated with Dr. Bihari and he explained that the manner that LDN works makes the immune system work more correctly so that it doesn't attack 'self'.

The only reaction I have seen from the NMSS is what I consider the unthinking, even knee-jerk reaction that if LDN boosts the immune system then it must be bad for people with MS.

I think we should be putting pressure on the NMSS to fund clinical trials rather than just dismissing LDN out of hand.

Larry

[Guest guest]

and Zora,

Your suggestions are good but I don't think any amount of logic will

persuade the 'powers that be' in the NMSS.

That is why I have this idea about flooding them with sheer volume of

email. Many here have already tried logic and friendly persuasion.

That's why I dream of 10's of Thousands or even 100's of thousands. I

know it isn't logical but I'm not sure how logical an organization

like the National Multiple Sclerosis society is.

I have had letter writing achieve change (to a commercial enterprise)

so I know we can do it.

Larry

[Guest guest]

Larry,

I know exactly how you feel. The NMSS has to many doctors who sit on their

board. So flooding them with letters will certainly get their attention.

Shown me a sample letter you'll be sending so all of us can get some idea

when we draft our letters to send! Good luck, I look forward to hearing from

you again.

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

From: Larry [mailto:larry@...]

Sent: Friday, October 01, 2004 2:07 AM

low dose naltrexone

Subject: [low dose naltrexone] Re: Get some support from the NMSS

and Zora,

Your suggestions are good but I don't think any amount of logic will

persuade the 'powers that be' in the NMSS.

That is why I have this idea about flooding them with sheer volume of email.

Many here have already tried logic and friendly persuasion.

That's why I dream of 10's of Thousands or even 100's of thousands. I know

it isn't logical but I'm not sure how logical an organization like the

National Multiple Sclerosis society is.

I have had letter writing achieve change (to a commercial enterprise) so I

know we can do it.

Larry