This Is MS Multiple Sclerosis Community: Knowledge & Support

I believe the autoimmune theory for MS has been researched for some 70 yeas now. Despite numerous studies ( far exceeding the 30 you quote) the scientists have still not been able to prove that MS is an autoimmune disease. That in itself is a sad commentary for the theory.

During this same time period, there has been other research involved in MS although nowhere near the level of the automimmune area. We have seen Drs Barnett and Prineas demonstrate massive brain lesion activity with no evidence whatsoever of immune system response. Dr. Hinton Jonez, back in the late 40's and early 50's saw symptom improvement in about 80% of the the MS patients that he treated with IV histamine. Recently we have seen various degrees of symptom improvement with the CCSVI treatment.

And all of this, including the automimmune theory work, proves what? NOTHING! Nobody knows for sure what mechanism actually causes the demylenation in MS patients. All theories without proof. The autoimmune theory people have published the most information because they have had the most funding and most people involved. That doesn't make it any more right than the others. In fact, because they have been at it longer and more intensely than the others, one could say that their direction is more likely to be wrong when it comes to MS.

You have stated that the CCSVI theory is very weak. Is that surprising in view of the fact the research is in its infancy? Hardly.

The results that we have seen with the various drugs and procedures that people have used for MS over the years is all over the map. The vast majority of the data comes from the potent immunosuppressant drugs that have come out of the huge amount research in this area but are the success results much better than other less studied treatments? Quite debatable at least!

So the research using the EAE model, CCSVI theory and perhaps others will continue on. But please don't tell me that the EAE model is the correct way to go. After 70 years of failure when it comes to trying to solve MS, I am one who remains skeptic.

Harry

Harry,

I never said CCSVI is week. I just don't understand it as it relates to the cause of MS after reading posts here. So if someone could answer the questions above maybe I can better understand.

I have never posted in the CCSVI forum because that is their perspective and they could be right in the end. So I would suggest that people who disagree with my postings should refrain from commenting in a derogatory fashion. It may be more useful to start a new thread explaining why MS is not autoimmune with supporting data.

I agree with you that most of the focus in the past was centered on immune system supression which was a mistake.
But this does not mean we should discount the evidence showing that MS is a immune system malfunction.

These are my views and have started a thread to provide information that supports this view. Yes it could be wrong but I think it gives people information to consider.

CVFactor: the way "I" understand CCSVI and why it might lead to MS development.

After the brain (then in the veins), somewhere upper stenosis/blocked valve/constriction/whatever, reflux of blood is creating a stagnating pool of stuff not drained properly (iron, heavy metal, bad things, name it.... ). Different persons have different vein walls health (which is reasonably permeable under normal conditions - endothelial health if I am correct).
The most unlucky, after years of worse stagnation, reflux (again very subjective) have that endothelial barrier losing strength (ruptured?) and certain undesired elements get in. Then the immune system attack those...
I strongly believe (since 1998 when I was diagnosed) that the immune system just do his job; cleaning... But metal bind with myeline then.. We go to the wheelchair....

("My" explanation; hope it might help; forgive me since there are certainly many imprecise or even wrong points)

Well, CCSVI is definitely not "week" )) Perhaps I used the wrong word to describe your post. You and many others don't understand it as it relates to the possible cause of MS. I don't think Zamboni said it was the cause either. He just discovered the condition in many MS patients and having performed the procedure on many, saw the results. He has always wanted his initial work to generate the research needed to investigate it. There have been theories coming out of his work, all unproven of course. It's the trashing by some established MS docs that is disturbing to see. A lot of misinformation has resulted of what he did (thank you internet).



Unfortunately when it comes to the internet there are some who reply in a derogatory manner when they don't agree with what others have said. I can certainly verify that! But here in ThisIsMs, it doesn't have very often. And a new thread explaining why MS is not autoimmune?...Shouldn't the question be "proving MS is autoimmune"? You are asking people to prove a theory isn't correct when in fact, it has never been proven in the first place.



I guess you should direct that question to Dr. Behan, Dr. Barnett, Dr. Prineas, Dr. Chadri etc.. They are but a few who have questioned the immune system malfunction. Having followed MS research for some 45 years now, I want to be shown proof that MS is an immune system malfunction and until now, nobody has been able to do that.



I will always listen to a person's view and opinion and respect it. Whether I agree with it is another matter. While the articles you provide support your view, it doesn't mean the articles are scientifically correct when it comes to the cause of MS. After all this time nobody can prove the cause of MS even though millions of dollars have been spend on the autoimmune theory alone.

Harry

+1 Harry

Why do we have to prove wrong a theory that has never proven true in the first place?

_________________
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

Sou,

I guess it's in the semantics of what we may be trying to say. I agree with you in that any theory has to be proven scientifically true before it is accepted. Until that time, it is still just a theory. So you are right in that there isn't much sense in trying to prove something wrong which has never been proven in the first place.

Harry

MS may or may not be auto-immune, only time will tell.

All I can say is that with the disease of was struck with (ADEM) I looked like that poor mouse in the EAE article I posted above.

Paralysis of the legs, permanent urinary retention, tremors in upper limbs, double vision and a CSF T-cell count 50 times higher than normal.

But this is an extremely rare disease and the recurrent form is even rarer.

Is this related to MS? My doctor and I say yes, but it is such a rare disease that very little is known about it.

So, when I got out of the hospital I wanted to know what this ADEM was and what was my future going to be like.

I come upon a lot of information regarding regulatory T-cells as a possible cause for auto-immune diseases. A lot of research.

Here is a very good description of what Tregs are and how they are believed to function in humans (taken from my thread):

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2565852/

This is from a researcher working on diabetes, but many others think is has implications for other diseases as well.

Below is a link to a company that is actually developing cell therapy for several auto-immune diseases:

http://www.txcell.com/index.php?option=com_content&task=view&id=60&Itemid=115

There is a lot more information on the thread I started in the Natural Approach section:

http://www.thisisms.com/ftopic-15479-days0-orderasc-0.html

I'm not saying that this theory is an end all, but in my view we should not eliminate all avenues just because approaches in the past failed.

I agree that we shouldn't eliminate all avenues for any kind of research but in the case of MS, other avenues have been "smothered" because of the MS World of Medicine's obsession of MS being autoimmune.

For years, the vast majority of MS research money came from big pharma whose interest was developing high cost, long term auto immune suppressive drugs. The belief was and still viewed by many, that the patient's immune system had to be suppressed so myelin wasn't attacked. Other possible explanations and drug therapies were swept quickly under the carpet so this course could continue. Dr. Freedmen, a top MS doc in Ottawa came out and called Dr. Zamboni a quack! Pretty brutal in the medical profession.

But until now, these drugs have provided little benefit to MS patients and a lot of benefit to big pharma. That's just how it is in the business world.

Over the years I really believed that the autoimmune theory was the answer. But as time went by, I changed my thinking and highly doubt it is the answer. I realize that a lot of knowledge has been gained in studying the immune system and new discoveries are happening every day. Perhaps some dramatic breakthrough for MS will happen in the near future in this area but I won't hold my breath. I think 70 years is long enough to prove a theory.

Harry