Just curious...

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Just curious...

Postby chrishasms » Tue Mar 10, 2009 4:50 pm

Just curious about something...

If you were involved in a clinical trial, it stopped, lost funding, numerous people had absolutely no luck on the medicine, or something else was out there that has shown darn near 100% effectiveness, would you continue to try to get the drug financed or would you admit defeat and move on?

The reason I ask is I know of some folk who are pretty high up in some MS groups, and I would rather they put effort into something active and viable, than things that are dead or in limbo.

Just curios your thoughts if I even get a response,
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Postby notasperfectasyou » Tue Mar 10, 2009 4:53 pm

Chris,
This is a tough question. But I urge you to read the Toxavin boards. You have a real life answer there.

Lyon?

Ken
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Postby Lyon » Tue Mar 10, 2009 6:25 pm

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Postby notasperfectasyou » Tue Mar 10, 2009 8:31 pm

Perhaps I misunderstand. What was described, as I read it, was pretty close to a description of Toxavin. I understand that folks in the trial felt better, but the trail didn't hit the endpoint. While that don't mean all is lost, it just makes it harder to get an MS vaccine to happen. So, I am open to correction.

I didn't read anything about rebooting in the question and I suppose we all bring a certain pair of sunglasses to the beach that's a different shade for each of us. I can take the idea of rebooting and frame it within my idea of bacterial cause. So, if you kill all the bacteria, then you get a reboot, yes? YES! I say you do. Those are my sunglasses. Chris' may be rosier.

T-cells, B-cells, macrophages, etc. Yes I can show that all those are framable within the ABX positon too. But, honestly, I'll go with something that's nearly a recent quote from Lyon ...... If something is shown to work and I can jump ship in a heartbeat. Ken
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Postby rainer » Tue Mar 10, 2009 9:05 pm

It is an interesting question but Chris is tipping (and overplaying) his hand with the "100% effectiveness" card. :?

There is something to be said for people helping to further the research. Unfortunately that can sometimes mean negative results.
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Postby Lyon » Wed Mar 11, 2009 7:33 am

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Postby chrishasms » Wed Mar 11, 2009 9:27 am

Hey I am fine with people who don't believe me. I just do some work with the people in Denver- so all those Tovaxin trialers who took offense to this don't flatter yourselves- who seem to think trials with combo drugs are worth a lot of time, and drugs like Campath, HiCy, Cytoxan, hell even Tysabri are not. I just don't understand where those trials are doing any good when we have so much other stuff out there.
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Postby notasperfectasyou » Wed Mar 11, 2009 9:53 am

Chris,
You sound like you are certain you have found the cure. I can't understand being so dismissive of the work of other, unless you have identified something ground breaking.
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Postby chrishasms » Wed Mar 11, 2009 10:42 am

No I don't. End that right there.

All I am saying is why, why why why, would you take hundreds of thousands of dollars to spend on a trial for Avonex and Copaxone duality, instead of treating with Tysabri?

Makes no sense to me. 2 drugs with a 30% efficacy instead of Tysabri?

I guess some people would just rather be in the medical box rather than thinking outside it. I'm mad as hell I have donated to help fund such idiocy.
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Postby notasperfectasyou » Wed Mar 11, 2009 11:45 am

This is cute. I just finished defending why the retirement plan at work should offer a Roth option, when I'm dead-set opposed to what the Roth retirement plans offer.

I'm not trying to be a smart butt here, I just want to be clear about that.

I think we need to know stuff. Certainly if I were calling the shots I'd fund things slightly differently, but many wouldn't agree with how I'd do it either nor would I expect concensus if you or Lyon or anyone else here was calling the shots with the exception of jimmylegs. But at the end of the day, we need to do research because we need to know stuff.

I read a lot of articles. I'm glad there is a lot of published research. I'd like to spend money to make all the articles available for free. That's what I'd spend money on first. I don't know what's been done on Avonex and Copaxone, but as someone who has read a lot about both, yes, I'm interested to know what they find. I think there is value in that. Time for an analogy......

When your favorite NFL team is facing 4th and 1, most of us scream "GO FOR IT!" at the TV. But, NFL coaches more often than not choose to punt. But even if they do go for it, when they don't make it we qualify everything else that happens in the game afterward with, "If they hadn't have gone for it then blah, blah blah....". I think if a researcher can get someone to fund them, then they ought to be able to do the research. I don't want the government telling us what we can and cannot take (like in Australia) any more than they already do. Nor do I want the government telling us what kind of approach to MS is the "right" one.

.... and I don't want a committee of experts to be calling the plays for my Redskins and Steelers. Ken
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Postby patientx » Wed Mar 11, 2009 12:22 pm

I'm one of those idiots in the Copaxone/Avonex trial. Sorry if I'm wasting anyone's money.

I thought this might be a good step before I got zapped with hardcore chemo. And JH wouldn't take me for HiCy, anyway, since my MRI didn't enhance (yes, I did call them).
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Postby Lyon » Wed Mar 11, 2009 1:01 pm

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Postby notasperfectasyou » Wed Mar 11, 2009 1:56 pm

Jimmylegs is brilliant and I'd have her incharge of the TIM's lab in a second. Dare I say ..... first female head coach in the NFL. I don't know anyone else here who knows what all that crap on the little piece of paper you get after the test means. I can handle arrows pointing up and down and that's about it. Jimmylegs actually knows what all that stuff means. Ken
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Postby cheerleader » Wed Mar 11, 2009 2:26 pm

notasperfectasyou wrote:Jimmylegs is brilliant and I'd have her incharge of the TIM's lab in a second. .... I can handle arrows pointing up and down and that's about it. Jimmylegs actually knows what all that stuff means. Ken


Agree 100%, Ken. I've already suggested we pool our money and open Jimmy's lab of the frozen tundra...any takers???

Chris...I admire you a bunch, but you gotta admit, this disease is kicking people's butts (even folks who've done revimmune), and none of us really know that what works for one person will work for another. Or what is really wasting time and money. Until we truly understand the mechanisms of MS, it's all subjective-
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