Re: petition online

[Guest guest]

I think it is a wonderful idea. But what would you petition? Let me know what you come up with. I am all for helping get the word out about LDN.

[Guest guest]

I dont think just getting the word out is going to do it. People in

general are going to be blind to LDN or anything else that isnt

endorsed by the medical or pharmaceutical establishment. I know this

sounds stupid, but I think a lot of people who have MS or any other

medical issue like the feeling of being part of a 'group' or a

clique. I often wonder if this sense of 'belonging' is more

important than the actual disease or any treatment for it! Take

MSPeople for example, I posted that great recent article by Tom

there, and it was immediately deleted, management saying that the

reason was because it contained an email address of someone, and she

was protecting THAT person's identity. I tried to explain that

ANYONE could become a member of one of those group's and click on a

members name and see their email address, and whoa, the sparks

started flying. A few members got pretty nasty. examples:

Dave, what makes you assume that you're the jackass he's referring

to?????????? Could it be that you know that you're the only jackass

here? After being banned already why would you bother to rejoin

under a different name when you know you weren't wanted here? Is it

just to cause trouble? Too bad I was hasty in setting my profile

back to member rather than asst. manager. I'd boot your ass so far

into next week you'd have to pack a lunch to get back. -morgan

SORRY GUYS BEV,SHERI,DEB, & HANDS I CAN'T STAND NO WILL NOT STAND THE

BULLCHIT I KNOW WILL BE TRYING TO TAKE OVER THE BOARD AGAIN SO I'LL

JUST CHECK IN ONCE AND A WHILE TO SEE IF A CERTAIN JACK-ASS IS STILL

HERE.I WILL MISS THE PEACEFULCAMARADERIE WE HAD.-gimpy

OK, I DID rejoin under a different name, but only for informational

purposes. But what I noticed, look at 'gimpys's post. He will miss

the peaceful 'camraderie'!???????? I was banned again obviously, but

THAT persons post sent me a signal. Maybe for some, as pathetic as

it sounds, having a disease like MS helps replace

their 'loneliness', and things like LDN, etc, are threats! Am I way

off on this?

[Guest guest]

, I won't engage the question of in-fighting elsewhere. I will say that

the idea of a petition is a good one for getting the idea out to people who

are in a position to make a difference, i.e., researchers. Many neuros have

never heard of LDN, so it wouldn't surprise me if few researchers have. It

seems to me that this would be the best idea for a petition--trying to get a

clinical trial.

Usually funding comes about through a research team making a proposal to a

funding source like NIH. Much more rarely, a granting agency makes available

funds for a specific research project and invites applications from

interested researchers.

Perhaps we should take a look at MS clinics and research groups who have

done a lot of MS research already. We could select and petition one to

develop a proposal for a clinical trial. Has Dr. Bihari ever said anything

about conducting a clinical trial? Is there any research group he would

propose to conduct one?

I know the NMSS does a lot of research funding. Anyone know if they ever

invite applications for specific research projects? If they do, perhaps we

could petition them to invite applications for a trial of LDN.

Galoux

[Guest guest]

Hi Bou,

Of course I agree with you, it's going to be an uphill battle, thats

for sure!