This Is MS Multiple Sclerosis Community: Knowledge & Support

I read the “Big Gene” study yesterday and it simply tells us what we already know, most of the identified genes for MS are related to the immune system. This is not a surprise given that there is no doubt the immune system plays a significant role in MS.

However, the question remains, is the immune component primary or secondary. The current data we have now best fits with the model that MS is primarily a neurodegenerative disease and that the immune response is secondary. Whether or not CCSVI drives the primary neurodegeneration is beside the point. All we can say is that CCSVI is currently the best candidate for causing the primary neurodegeneration and, until a better candidate comes along, I’ll accept CCSVI as the primary driver of MS.

Basically all the “Big Gene” study tells us is that most persons with MS are genetically susceptible to developing a dysregulated immune system due to one or more environmental factors such as an EBV infection at the time of low immune regulation (ie low vitamin D). When such a dysregulated immune system meets all the myelin antigens released due to primary neurodegeneration, you end up with MS. This model - primary neurodegeneration followed by a genetically and environmentally generated dysregulated immune response - explains everything we know about MS.

A recent paper on MS as a neurodegenerative disease expresses this well. Stys (2010) writes “one could equally argue that the strong genetic influence simply reflects a genetic bias of the aberrant immune system, rather than of the "real" disease itself.” The “real disease” referred to by Stys is primary degeneration presumably caused by CCSVI. For those interested in all the arguments which support MS as a primary degenerative disease, I highly recommend the Stys (2010) paper (http://www.ncbi.nlm.nih.gov/pubmed/21246931)

It is not surprising that Compston and Haffler are fighting CCSVI because they both have huge financial ties to the MS pharmaceutical industry and are "big names" in the MS research world. The anti-CCSVI press release on their findings is just more propaganda to fight the CCSVI steamroller that threatens their financial well being, not to mention their lofty standing in the MS reseach world. It is sad to see them stoop to this new low, but cash flow and academic reputation trump everything in the world of MS "research".

Thank you Dr. Embry for once again having special insight into the motives of other scientists.

http://archneur.ama-assn.org/cgi/conten ... l.2011.185

It sure seems like science. Why is everyone against science? It is lousy to say "all the genetic study does is." The genetic study defines targets for treatments and pathways that lead to disability. Come on!

This is a valid question, particularly given the array of drugs we have to choose from that have extreme effects on the immune system, thus raising risks of cancer, death from PML, etc.

The "real disease" is holes in my brain. It is pretty simple.

Beside that, I do agree. The immune response is secondary to T cells becoming sensitized to myelin in the cns. The T cells aren't supposed to be there. Lots of things can bring them there, like viruses, and knocks to the head, even ccsvi as it is known. The fact doesn't change that there is an overactive immune system sensitized to cns myelin.

There are different types of MS. Some are more inflammatory than others. The 'real' disease is not just the holes/white matter lesions but also, from the very early stages of the disease, damage to the gray matter of the brain. The idea of an autoimmune attack against the myelin does not well explain that early gray matter damage. The immune system response may be causing damage but one difference between CCSVI theory and autoimmune theory is that in autoimmune theory the immune system is believed to be causing all of the damage and in CCSVI theory it is believed to be causing some of the damage.

Fair enough about your theory.

The comment I made about the REAL disease was obviously a superlative statement and did not require a lesson to teach us about grey matter, but whatever. You still brought up a good point. Damage to the grey matter can be devastating.

Yes, especially hypoxic damage to the gray matter, as posited by one of the presenters at ISNVD, who is a leading neurologist, whose name has slipped me....

If the immune component alone is responsible for MS then an OFF/On procedure for the immune system ( bone marrow transplantation or Revimmune ) should lead to a certain percentage of healed patients but that is not the case.

Therefore the immune component seems to be a co factor of the disease.

R.

.

Is your information from an RCT with an appropriate sham arm? Please share the link if you have it. I have not much read up on some of the more drastic attempts at stopping MS.

To demonstrate such a fact -according to our certified skeptics on board- a multi center, double blind, randomized large trial and 20 years of following up would be needed.

I think statistically significant reduction of new lesions is pretty good. I know it isn't the end all, but it is something less subjective than stories. Hazzard control models are pretty good evidence that something is working or not. That kind of evidence is reproducible and has been critically reviewed for over 20 years for interferons. Companies now use the results gained from rebif to benchmark new drugs. You can be assured that there is a lot to win or loose from those comparison trials that keep the competitors working hard at reviewing each other's work very critically for any foot they can get in the door to such a lucrative market.

Right now, ccsvi doesn't have anything but testamonials. Doctors have shown case after case insignificant results. Those studies that refute ccsvi (really refute it with hard evidence) get overlooked as some sort of evil plan or conspiracy to keep it from going mainstream. The work is good and can be repeated over and over, and has been repeated over and over. The studies show no statistically significant correlation between what is proposed as ccsvi and MS. What more could a person want? Those are simple facts, easy to understand. It is cognitive disonance to be able to read such studies and say that ccsvi is the cause, or the symptom, or related in any way to MS. The next thing people do when they can't refute the science, is slander the people: "The evil drug companies" "nuerologists don't want to lose their market" "those doctor's are biased"

I don't see ccsvi will ever be disproven to the public, but it has been disproven to the larger medical communities.

Exactly, they both knew before embarking on this "quest" that the game was rigged in their favor. Now it's merely a matter of sitting in the stands with megaphones and barking at the appropriate times....

Since everything from the scanning modalities to brains and veins is highly individualistic there is no, and never will be a "one size ccsvi fits all" to be had.

Just a matter of what particular vein of information one focuses on. Some of these latest headlines and topic starters tell us all we need to know in that regard..

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap