Just curious...

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

Postby chrishasms » Wed Mar 11, 2009 6:37 pm

I do admit 100% and I am one of the people who is getting their butts kicked unless I work my ass off.

All I am saying is I think it is money better spent elsewhere. Perfect example is Aids. They found AZT, and stopped a grip of other drug development to fund it, because they saw the good it did. AZT has saved countless lives.

Now in a disease like MS, where we know early detection is key, and now we are learning that ending progression sooner seems to lead to a longer remission, why would we not want to pool our money into the MS communities "AZT" whichever NEW NEW drug it may be?

I personally would feel much better having Chronic Cerebrospinal Venous Insufficiency, Revimmune, Tysabri, or Campath studied with my money I've donated than a trial to tell me Avonex and Copaxone together may slow this disease up to 45%.

I may be a bit biased towards HiCy because my MS damage is healing. I had a new lesion and it healed itself and the old lesion are healing to. I am not saying some of these other treatments do not achieve this because I believe Campath does too, but I know 100% none of the injections provide for any healing and a 2/3 chance it won't slow progression.

So again it raises my ire when I think of the thousands I've helped the NMSS or the Colorado chapter get, and from what I can tell, it's this:

"We better keep people where they are or we won't have a job."
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Advertisement

Postby notasperfectasyou » Wed Mar 11, 2009 7:36 pm

Yes, Chris a lot of people are angry. I am open to disagreement and I think disagreement is good. If we all agreed on everything, TIM's would be half as interesting. But my point is that having a religion is a great thing and I encourage everyone to think about it. But, we need to draw the line at the point where we start telling others that their religion is wrong and they ought to stop wasting their time practicing it. They really ought to try one of the right religions. I have my own frustrations about MS research, they are all documented here at TIM's, but I also know that I'm going to have to do better than telling everyone that Kim is vastly improved and walking without a stick to make a point that holds water for others besides Kim, me and the other ABX'ers here at TIM's. By the way Lyon is wrong and I am right. :) Ken
User avatar
notasperfectasyou
Family Elder
 
Posts: 774
Joined: Thu Feb 09, 2006 4:00 pm
Location: Northern Virginia

Postby Lyon » Wed Mar 11, 2009 7:52 pm

..
Last edited by Lyon on Wed Jun 22, 2011 2:56 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby Lyon » Wed Mar 11, 2009 8:22 pm

..
Last edited by Lyon on Wed Jun 22, 2011 2:56 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby chrishasms » Wed Mar 11, 2009 8:49 pm

I appreciate the religon analogy as I never thought of it as this.

However, as there always has to be.

I am a Christian and appreciate other religions as well. I don't know which one is right.

However, if Christ came to earth and started to make MS people walk we would all be Christians.

That being said if someone had a drug that was enabling people to walk with MS, why are not more people with the money interested in funding these?

I will also say if a treatment was 100% effective we would all be that religion MS wise. I also just think some of these drugs in trials are analogous to snake handler religions. Some people might not get bit but look out if you do.

I just still can't understand why they don't put the money where the results are. How much money do they waste?
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Postby rainer » Wed Mar 11, 2009 9:39 pm

Lyon wrote:
notasperfectasyou wrote: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.
I'm always willing to give an answer regardless of whether or not I know what I'm talking about.....that's not good enough all of the sudden?

I don't know, since Jimmy published the "ice skating divas" picture and the guys realized that Jimmy's about as far from a guy as you can get, she's been getting unfairly preferential treatment :lol:
Bob


Lyon - If it makes you feel better, if you were a pretty girl I would still think you were an airhead :)
User avatar
rainer
Family Elder
 
Posts: 367
Joined: Thu Jan 17, 2008 4:00 pm

Postby Lyon » Thu Mar 12, 2009 3:01 am

..
Last edited by Lyon on Wed Jun 22, 2011 2:57 pm, edited 2 times in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby patientx » Thu Mar 12, 2009 4:38 am

I just still can't understand why they don't put the money where the results are. How much money do they waste?


Chris,

I can understand where you are coming from; I have to admit I don't know much about where the NMSS money goes. But if you're wondering why things aren't moving quicker with Revimmune, you should ask the doctors at Hopkins. Accentia BioPharmaceuticals owns the patent rights to Revimmune, so they're calling the shots where it's concerned. Likewise Genzyme owns the rights to Campath. They're the ones in a position to expand its use. Just yesterday, I found out my MS center was dropped as study site for Campath because they were not finding volunteers.

I guess it goes back the problem that the real treatments for diseases are developed by private companies.
User avatar
patientx
Family Elder
 
Posts: 1068
Joined: Wed Sep 10, 2008 3:00 pm

Postby notasperfectasyou » Thu Mar 12, 2009 6:42 am

chrishasms wrote:However, if Christ came to earth and started to make MS people walk we would all be Christians.


So if, Brahma came to earth and cured you of MS, you'd dump Jesus? I just need to see if your arguments are genuinely fair and level or if there is a skewedness that's intended to disturb others. I'm happy to debate openly, always have been, here at TIM's - but I am opposed to playing Pythonesk "no it isn't, yes it is". Ken
Last edited by notasperfectasyou on Thu Mar 12, 2009 7:24 am, edited 1 time in total.
User avatar
notasperfectasyou
Family Elder
 
Posts: 774
Joined: Thu Feb 09, 2006 4:00 pm
Location: Northern Virginia

Postby robbie » Thu Mar 12, 2009 7:20 am

this is way better than politics lol, i think we should take the money that is helping us go nowhere and fund the starving children here at home not over seas, it's all about the kids we've had our fun..
Had ms for over 19 years now.
User avatar
robbie
Family Elder
 
Posts: 1148
Joined: Thu Jan 27, 2005 4:00 pm
Location: Northern Ontario, Canada

Postby chrishasms » Thu Mar 12, 2009 8:38 am

Robbie you are EXACTLY where I am.

I am all for Jesus Christ because he is the only Savior who forgives and performed Miracles showing himself as God's Son. I used the analogy of Christ because I am Christian and it's easiest for me to use. If you must to be able to understand, change it to "A Higher Power" if it makes it easier to handle.

Revimmune (Accentia)I know, is waiting patiently for some big big money from a major player in the pharma world. The big players too are just waiting for the stock market to start going up. The reason being is I guess the FDA is fairly OK with Revimmune and has been granted a verbal fast track status as soon as the money is there. As soon as well, I can't say the name of who it is, comes on board, there is going to be a large press release with findings from all the folk JH has done - Not just the original 29.

Again this may be a sledge hammer approach to MS, but, if you do it once, never accrue any disability, or recover from the little you may have attained from the exasperation to make you realize you have MS, who cares if it's chemo? Do you think anyone will care if the doctor says I'm going to give you the flue for a week but then the MS will be gone? (Some people may need 2 doses to get rid of all the auto immunity)

Again, I reiterate, if someone else had a treatment that worked this well I would drop HiCy in a minute...they just haven't. Yet I hear people all the time who are perfectly viable candidates to end this monster but they would rather bitch about it.

Personally when the fatigue left me and I knew I was getting better I knew I had found the Holy Grail of Auto Immune Diseases. Unfortunately I got yelled at by people who are total candidates to be done with disease so I stopped. I am a firm believer half of those people are the same people who will be pissed at me when there docs suggest them to do it in 2 years. Sorry if you don't get it all back. I waited because HiCy wasn't an option. I was number 3 when it became one. No offense folks, I don't care what you guys do. I am hear to provide an honest answer.

So I know for a fact the NMSS has been approached for money and said no. I also know they are not funding a few potential NEW real treatments in loo of playing with trials with existing drugs so they can see if there is a 5% improvement in a endpoint!?! Huh??!! Excuse me if I roll my eyes.

So again I ask, who is the NMSS side on?
Last edited by chrishasms on Thu Mar 12, 2009 9:01 am, edited 1 time in total.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Postby cheerleader » Thu Mar 12, 2009 8:59 am

Look up the corporate sponsors of NMMS, Chris. I think it will make it clearer....
(hint: Biogen, Pfizer, Teva, Bayer, etc.)
AC
PS- Hubby has cancer all over his family tree. He also has basal cell on his face and back. That's why he decided to wait a bit before pursuing chemo route. I respect his opinion. As I respect the opinions of many others.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5031
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby chrishasms » Thu Mar 12, 2009 9:04 am

See - all I can say about that is one of those listed is who Revimmune is waiting on!!!

I understand some peoples decision. If I was taking Avonex and had nothing new for years I wouldn't do this either.

PS - Did I mention I hate Lobbyist too?
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Postby patientx » Thu Mar 12, 2009 10:00 am

http://www.pubmedcentral.nih.gov/articl ... id=2574697

I suggest taking a look at the "Acknowledgments" section where it shows the funding/support.
User avatar
patientx
Family Elder
 
Posts: 1068
Joined: Wed Sep 10, 2008 3:00 pm

Postby chrishasms » Thu Mar 12, 2009 10:32 am

I know but take a look at how long ago that was. 2003-2006. Why is JH doing it on their own now?
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

PreviousNext

Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service