Autoimmune uncertainty?

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

Autoimmune uncertainty?

Postby Thomas » Tue Oct 27, 2009 6:04 pm

From Wikipedia´s article on Multiple Sclerosis today:

"Multiple sclerosis (abbreviated MS, also known as disseminated sclerosis or encephalomyelitis disseminata) is an idiopathic disease of suspected autoimmune cause, in which the body's immune response attacks a person's central nervous system (brain and spinal cord), leading to demyelination."
http://bit.ly/oAhV

and from NMMS homepage:

"MS is Thought to be an Autoimmune Disease"
http://bit.ly/3ofHP

(emphases mine)

Wasn´t both the NMMS and wikipedia recently more certain than this?
Thomas
Family Elder
 
Posts: 115
Joined: Mon Mar 07, 2005 4:00 pm
Location: Europe

Advertisement

Postby cheerleader » Tue Oct 27, 2009 6:20 pm

Not since I started reading up 2 yrs ago....MS was always a disease of "unknown aetiology" and the autoimmune theory was only a theory, since a specific antigenic target was ever found. But I could be wrong...
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5015
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby notasperfectasyou » Tue Oct 27, 2009 7:05 pm

Most any medical journal article from a reputable peer reviewed publication is going to have a statement like that. It is only when you get to less authoritative material that you start to see more certain and therefore false statements. The fact is nobody has certainty about the cause.

Autoimmunity is unproven. it is a theory, not a fact.

Here's an article from the Journal of the American Medical Association that begins with:

"Prevailing thought is that MS is an autoimmune disorder whereby an unknown agent or agents triggers a T cell–mediated inflammatory attack, causing demyelination of central nervous system tissue."


Munger, Kassandra et al. 2006 Serum 25-Hydroxyvitamin D Levels and Risk of Multiple Sclerosis

I happened to be reading this one on the way home on the train tonight, and I thought it had a very fair and typical explanation. If the folks at JAMA are uncertain, I think it speaks volumes. Ken
User avatar
notasperfectasyou
Family Elder
 
Posts: 774
Joined: Thu Feb 09, 2006 4:00 pm
Location: Northern Virginia

Postby Thomas » Tue Oct 27, 2009 8:13 pm

:D
Last edited by Thomas on Tue Oct 27, 2009 8:22 pm, edited 2 times in total.
Thomas
Family Elder
 
Posts: 115
Joined: Mon Mar 07, 2005 4:00 pm
Location: Europe

Postby Thomas » Tue Oct 27, 2009 8:17 pm

@cheerleader: I think you´re right, I just was under the impression that it was more certain than it was. But this opens up a whole other can if worms (for me at least).

notasperfectasyou wrote:Autoimmunity is unproven. it is a theory, not a fact.
So if I get a "probable" ms-diagnosis I probably have Multiple Sclerosis which is suspected to be Autoimune which by the way is a still only a theory. Great! :D

I just thought that science was about getting enough evidence and peer confirmations to be able to say with at least some certainty that your hypothesis is correct before treatments were based on your hypothesis. Isn´t "suspected" theories really the same as "unproven"?
Thomas
Family Elder
 
Posts: 115
Joined: Mon Mar 07, 2005 4:00 pm
Location: Europe

Postby notasperfectasyou » Tue Oct 27, 2009 8:25 pm

Thomas,

I don't intend to sound like a smartie-pants, but I know I do sometimes come across that way. Science is excellent at stuff when the cause is determined with certainty. Polio is a good example.

When there is uncertainty, science isn't exactly so excellent. One of the biggest problems in MS is the wide-spread belief that it IS an autoimmune condition. IMHO, if we could convince science that it ought to me more open to other possibilities, rather then skewing resources toward autoimmunity, we might get somewhere faster.

That said, MS might be an autoimmune condition. But the key word is might. We have figured out how to cure mice of EAE though. Ken
User avatar
notasperfectasyou
Family Elder
 
Posts: 774
Joined: Thu Feb 09, 2006 4:00 pm
Location: Northern Virginia

Postby Thomas » Tue Oct 27, 2009 8:44 pm

@notasperfectasyou: you don´t sound like a smartie pants at all. I just don´t understand how MS treatment and research can be based on the suspicion that it is autoimmune. Science isn´t about suspicion is it?
Thomas
Family Elder
 
Posts: 115
Joined: Mon Mar 07, 2005 4:00 pm
Location: Europe

Postby cheerleader » Tue Oct 27, 2009 9:00 pm

Thomas wrote:@notasperfectasyou: you don´t sound like a smartie pants at all. I just don´t understand how MS treatment and research can be based on the suspicion that it is autoimmune. Science isn´t about suspicion is it?


You're right, Thomas. There is an immune response in MS, oligoclonal bands in CSF show this....and immune ablating/modulating medicines sort of work for a subset of MS patients. But because there has never been a reason found for this immune reaction, "auto-immunity" is presumed....but is presumption science? When Dom started posting the Zamboni research on iron deposition in gray matter and immune activation due to venous congestion and reflux (as first posited by Rindfleisch in 1830) I kinda found a new path. I know Ken and others are on another equally interesting path with antibiotics. We'll see where it all goes...

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5015
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby lyndacarol » Wed Oct 28, 2009 4:46 am

On the question of autoimmunity... part of the confusion could be in the vocabulary definitions that scientists and laypeople are using. I understand scientists use the word, "hypothesis," when the facts are NOT there to prove their idea. They use "theory" when the PROOF has been established.

In the language of us nonscientists, "theory" has uncertainty.

Autoimmunity is unproven. it is a theory, not a fact.


Yes, autoimmunity is unproven -- to one group (scientists), it is a hypothesis; to the other group (nonscientists), it is a theory. It might help if we all had the same understanding of definition.
User avatar
lyndacarol
Family Elder
 
Posts: 2223
Joined: Thu Dec 22, 2005 4:00 pm

Postby sou » Wed Oct 28, 2009 5:59 am

cheerleader wrote:There is an immune response in MS, oligoclonal bands in CSF show this
cheer


So do for stroke patient. Is it autoimmune, too?

The fact that firemen gather where a fire starts does not necessarily mean that they set it, too.

sou

Edit: Fixed a typo
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
User avatar
sou
Family Elder
 
Posts: 582
Joined: Sat Dec 20, 2008 4:00 pm
Location: Greece

Postby jay123 » Wed Oct 28, 2009 6:35 am

Had a good discussion with my neuro about this subject. I believe that he thinks (and I know it is what I think) that it is a multi-faceted disease thats going to take a lot to eliminate.
For example (and not to start any arguments), IMHO, my theory is that MS is caused by a vascular condition which somehow(?) causes the injuries (the lesions) which in turn causes the immune system to attack the area in a mis-guided attempt to repair it. And in addition to that, I do think (but I'm not medically educated enough to guess how) iron is somehow involved with these 'injuries'.
But to me this explains how we have had doctors and studies that for years have said it's vascular, no it's auto-immune, no it's blood--brain barrier problem, no it's heavy metal problem, no it's a virus the immune system is after --- guess what -- IMHO they were all right!

The only thing that bugs me about my opinion that it starts as a vascular problem is the Faroe Island study and the general prevalence of MS in northern latitudes. As for northern latitudes I understand the vit-d/vein health theory, but personally my whole life up until heat related MS problems) was spent outdoors whenever possible, say at least 6 months a year of a lot of sunshine. I did summer farm work, sports, swimming, yard work, house painting - I grew up in the day of games were played outside, not on TV (I'm 53). I wish I knew my vit-d levels for those years, now I know it's a little low but I am not outside often.
User avatar
jay123
Family Elder
 
Posts: 380
Joined: Mon Sep 21, 2009 3:00 pm

Postby patientx » Wed Oct 28, 2009 7:07 am

jay123 wrote:As for northern latituesd I understand the vit-d/vein health theory, but personally my whole life up until heat related MS problems) was spent outdoors whenever possible, say at least 6 months a year of a lot of sunshine. I did summer farm work, sports, swimming, yard work, house painting - I grew up in the day of games were played outside, not on TV (I'm 53). I wish I knew my vit-d levels for those years, now I know it's a little low but I am not outside often.


It's far from proven that MS is related to low vitamin D levels, and may only be one facet in what causes the disease. But I don't think one can say for sure that his vitamin D levels were adequate from spending time outdoors. As you mentioned, it would be a good data point to know what our levels were when we were kids. Even with spending time out in the sun, maybe there were absorption issues, etc. Also, who knows if the current minimum standard for vitamin D levels (32 ng/ml) is really high enough.
User avatar
patientx
Family Elder
 
Posts: 1066
Joined: Wed Sep 10, 2008 3:00 pm

Postby patientx » Wed Oct 28, 2009 7:09 am

cheerleader wrote:and immune ablating/modulating medicines sort of work for a subset of MS patients.cheer


That's not really accurate. I think many of those who received Campath would disagree that it "sort of" worked.
User avatar
patientx
Family Elder
 
Posts: 1066
Joined: Wed Sep 10, 2008 3:00 pm

Postby Loobie » Wed Oct 28, 2009 7:19 am

The key word there is "many". "many" patients will also tout the benefits of Avonex and Copaxone. Nothing certain about Campath by any means. Does it look like the absolute most promising pharmaceutical? Absolutely, but there are also many who will say the same thing about CCSVI and LDN and Tovaxin.....
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Postby patientx » Wed Oct 28, 2009 8:12 am

Loobie wrote:The key word there is "many". "many" patients will also tout the benefits of Avonex and Copaxone. Nothing certain about Campath by any means. Does it look like the absolute most promising pharmaceutical? Absolutely, but there are also many who will say the same thing about CCSVI and LDN and Tovaxin.....


True, and that's one reason I used the "many" qualifier. But for those people, it did a bit more than sort of worked.
User avatar
patientx
Family Elder
 
Posts: 1066
Joined: Wed Sep 10, 2008 3:00 pm

Next

Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users