This Is MS Multiple Sclerosis Knowledge & Support Community

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Lyon,

I would like to join your merry band of missfits. Everything I've investigated points to MS as being an autoimmune disease.

I can sing Rossini (and a few other composers) and identify most edible and poisonous wild fungi and speak Castellano and Galego?
Possibly not magic enough...
I think I'd prefer to be a character in a Terry Pratchett novel. A sort of Nanny Ogg kind of witch.
You guys go in front and I'll follow behind singing rude songs and making double entendres. Sounds like a really good sort of cocktail. Yep. That sounds good.

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bromley wrote:Lyon,

You're a brave man posting this. With those lunatics Harry Z, Sou, Algis and 5,000 CCSVI followers hunting you down you'll wish the world had ended on 21 May 2011.

I'd like to help you, but they're just too strong. RIP Bob.

Ian

Ian,

Anyone else on this board calling me a "lunatic" would certainly come under my cross-hairs. But seeing it came from you...well, enjoy your retirement.

Harry

Lyon wrote: For those who, like me, like to watch videos with interesting speakers rather than dry reading.

I deleted my avatar but this had been the image

Bob,

I thought that I would share my opinion (don't I always ) on Elrington's presentation.

I have to say that over the years, I have attended several similar MS discussions and as they go, this one was no different. Brief description of MS, what the theories are, current treatments, introduction of new drug, charts of trial data..etc etc. The same phrases...we hope to see....this may help....better than what we have....hopefully limit serious side effects..etc etc.

One different comment by Elrington was about the "illusion" of these drugs helping a disease that by its very nature, is remitting and relapsing. Interesting.

He goes on to mention that for SCT, the risk of death is 1/20!! (Kind of makes Tysabri's PML risk at 1/500 seem great!) Yet the desperate MS patient is willing to try this as opposed to sit and wait for his/her disease to slowly take them over. I guess this is exactly the same reason some MS patients try the alternative therapies (yes Ian, even CCSVI) But I bet the SCT patients aren't called "lunatics" by some, are they?!!

If you look at the circle chart that is presented, all the treatments are immune system modulation/suppressing powerful drugs. The CRABs couldn't compare themselves to previous DMDs because there weren't any. But now, these new drugs get compared to placebo and the CRABs to show they are more beneficial. Yes, it IS a competitive business out there!

I still wonder about those magnificent charts. Tysabri told us that it showed a 67% reduced risk of progression yet a statement by Biogen not long ago said that a 5 year study showed an actual 37% reduction in relapses.(over placebo I believe)

But if you look at the big picture over the years (and I've been there for many years) you'll see that regardless of the therapy chosen, some people benefit a lot, some don't change the least and some become sicker. And this applies to the alternative therapies as well although, since 90% of research involves the immune system drugs, the data is mostly anecdotal for the alternatives.

I wish I could get excited about Campath or some of the other drugs in the pipeline but I can't. What I see now is a huge increase in the competition between the various drug companies all vying for that multi billion dollar chunk of the MS market. That's just the way it is in our business society.

But regardless, we still don't know what causes MS and as of yet, still don't have a therapy that can be considered very effective. And that is but one reason why some MS patients will continue to put their faith in alternative treatments, even SCT which has such a huge risk.

Harry

I think the 1:20 mortality rate is from the intitial trial of sct. My understanding is that it is substantially less in the phase 2, and now into the phase 3 trials. Please tell me otherwise, as I dont want to work at fund raising only to find out something I missed in researching. The thing that is attracting me to hsct is the idea of taking out the unknown and replacing it with what is known. If the procedure arrests the disease in 80% of people, why wouldn't I do it? I'm really someone will talk me out of it ASAP, because it just makes no since in my Randian brain that something working so great hasn't been approved in over 10yrs of use.
CCSVI's 1/3 1/3 1/3 might even be worth giving a try if nothing else works. That Giles is one bright dude though.

shucks wrote:I think the 1:20 mortality rate is from the intitial trial of sct. My understanding is that it is substantially less in the phase 2, and now into the phase 3 trials. Please tell me otherwise, as I dont want to work at fund raising only to find out something I missed in researching. The thing that is attracting me to hsct is the idea of taking out the unknown and replacing it with what is known. If the procedure arrests the disease in 80% of people, why wouldn't I do it? I'm really someone will talk me out of it ASAP, because it just makes no since in my Randian brain that something working so great hasn't been approved in over 10yrs of use.
CCSVI's 1/3 1/3 1/3 might even be worth giving a try if nothing else works. That Giles is one bright dude though.

I'm only going by the 1/20 rate that Elrington mentioned in his presentation. If it has changed since then, perhaps someone can advise us.

Does the procedure really arrest the disease for 80% of the people? It is something relatively new to MS therapies (10 years is a short period) and there isn't a lot of data available at this time. Making an informed decision whether to try this would be quite difficult I imagine.

In the late 40's and early 50's, 80% of the thousands of MS patients that Dr. Hinton Jonez treated with IV histamine showed symptom improvement. Most don't even know about that today.

Harry

"

Does the procedure really arrest the disease for 80% of the people? It is something relatively new to MS therapies (10 years is a short period) and there isn't a lot of data available at this time. Making an informed decision whether to try this would be quite difficult I imagine. "

It sure is. I am trying to plan on some fund raising, but I am still looking for the hook, as I am a born skeptic.

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00

You know I'd like to but I can't argue with that Harry. That's why it pisses me off that Opexa's Tovaxin research has been allowed to drag out so long due to lack of cash. If there really are identifiable myelin reactive T cells and if eliminating them ends MS progression, that's close enough to defining the MS mechanism for things to quickly progress with comfort that it's headed in the right direction.

Bob...you must be mellowing as you age....that hasn't stopped you from debating with me in the past

"Lack of cash".....I'm convinced that if not having enough cash didn't matter, we would be much further ahead in finding a cure for MS. But we both know the system simply doesn't work like that. Only those who can afford it have their theories seriously researched.

Harry