This Is MS Multiple Sclerosis Community: Knowledge & Support

I used to agree with the wisdom of that quote....until I started working on computers!

I had to go out for a haircut first thing but I saw Lynda's post and was going to respond that it feels a little eerie to unreservedly agree with her. But I have to wonder, the NMSS doesn't dictate the direction of research do they? I was under the assumption that researchers come to the NMSS for funding projects of the researcher's choosing?

Bob

Hi Bob,



They don't necessarily dictate the direction but they decide if they agree with what you are doing and make the funds available to you...if they choose.

When Elaine was dealing with the NMSS in her quest to at least get Prokarin recognized by them, they told her that a study done at a Veteran's hospital in California in the 80's proved histamine wasn't any good in treating MS. It was a horribly designed study which the NMSS discovered they no longer had any information about in their own archives. Elaine provide them with the information of the study, how poor it was and that they were using it to try and discredit her work.

They then offered to possibly provide some funding for her trial but told her it would take a least a year before they could decide if they would make the money available to her.

Like I said, they pull all the strings.

Harry

Hi Harry,

I have to admit that when writing that last post it came to mind that the people with the purse do have the power to decide which directions research doesn't go.

I've kind of been bluffing my way through for a while and now it's time to ask. Who is Elaine?

Bob
7

Bob,

Elaine is the nurse who first compounded Prokarin. She has tried to get the word out, but it has been with out the help of the NMSS. The NMSS only advocates for Big Pharma, as best I can tell.

Brock

P.S. Just look at who sponsors them...

Brock/Bob,



Thanks Brock for providing that info.

Her full name is Elaine Delack and she has spent about 15 years researching histamine's use in the treatment of MS symptoms. Elaine is a RN and has MS herself. Since she started using Prokarin, she has been more or less symptom free and carries on a grinding schedule.

When Elaine first started approaching the NMSS about Prokarin, she got more road-blocks put up against her than you could imagine. After all, she was only a nurse and didn't have any corporate sponsorship behind her. And here is another bit of info about the NMSS....in one of their meetings with Elaine, it was "suggested" that if she were to have some "benefits" directed towards the NMSS, perhaps a higher level of co-operation may result!!!! Yeah....the lovely organization looking after the MS patients' best interests.

Harry