Could MS Doctors be Treating the Wrong Disease?
The thinking goes like this: the animal model of multiple sclerosis (which is used for treatment and drug development) is very different from the human experience of multiple sclerosis. In the animal model, the MS-like condition (in which the myelin indeed is attacked by the immune system) leads to death or disability, while in people the course of multiple sclerosis is much more varible (and only rarely leads to death). Therefore, claim the researchers, these are really two different diseases (with the further proof that, despite extensive research, these animal-based treatments do not "cure" MS).
Reactions to this theory vary, but most consider it an oversimplification of things and recent evidence of the impact of MS treatments on multiple sclerosis itself leads most researchers and physicians to believe we are "on the right track."
For the full-text article explaining this theory in more detail, see Abhijit Chaudhuri and Peter O Behan. "Multiple sclerosis: looking beyond autoimmunity." J R Soc Med, Jul 2005; 98: 303 - 306.
I’m not a doctor, so that article was confusing. I have had mono, and I’ve heard that EB can be linked to MS.
I’m hoping that enough smart people out there are going to do research on both sides, to get us closer to a cure. I’m on Tysabri, which is different from the CRABs, so it’d be interesting to see what data comes out, with patients having been on Tysabri longer. I saw my neuro yesterday, and he said it’s hands down the best drug out there. From what I’ve been reading and hearing—talking to other MS patients—people aren’t having relapses.
Julie, if you could translate that article in layman’s terms, that’d be great.
very interesting info…seems to warrant study and research from this premise…Doc Julie, how does the stem cell research (current or potential) relate to this premise?…brady
Have you looked at the Myelin Repair Foundation? I think that is the most exciting and responsible research being done today – regardless of what causes MS if we can repair the myelin then we can probably trace backwards to what’s causing the damage.
sharon
Thanks for the reference and description. I have no doubt that researchers are treating the wrong disease. I think to say that the current medications are working is a vast overstatement. They have more bad side effects than efficacy IMHO. Copaxone has been proven to have no effect on disability. Interferons make most people too sick to continue. Tysabri can lead to PML and for some reason yields terrible rebounds when people interrupt it. The upcoming intense immune suppressants (cladribine, fingolimod) cause cancer or deadly infections.
Most importantly, LDN seems to be working for many people with MS, despite the fact that it does pretty much the opposite of them all (boosting immune function instead of lowering it).
The ABCR drugs for MS aren’t terribly effective, yes, and yes, their side-effects can be pretty hefty. Tysabri, however, is very effective for most people that take it, and has very few if any side-effects for most people that take it. LDN, however, isn’t proven anywhere–all anyone has is anecdotal or shows it’s about as effective as the ABCR drugs.
Tysabri is NO BETTER than the rest. I think the idea that we are on the wrong track is on the RIGHT track. I do agree with the idea of repairing myelin and working backwards in meantime. Thanks for this post. You’ve said what the drug companies won’t.
RE: Steve .. Question: Are you a pharm rep for Tysabri? That’s a pretty BOLD statement! THAT is the problem. SALES of these drugs without FACTS to back them up. Shame on you.
Note that the article cited is five years old. MS research has come a long way since then. I wouldn’t be too concerned over any confusion one may have in understanding its content.
Regardless of the age of the article, questioning the idea that all of the types of MS are a result of the same disease process has merit. When you look at the multitude of manifestations, it seems likely that at some point research will reveal a variety of mechanisms at play which result in similar but not exactly the same condition.
Study shows evidence that myelin-producing cells die before there is any immune system activity
The study examined twelve brains of people with multiple sclerosis, concentrating on newly forming areas of disease activity called lesions. It found that the oligodendrocytes in these lesions were dying before there were any signs of inflammation.
This implies that it is not the inflammation that causes the death of the oligodendrocytes in multiple sclerosis but the other way around. The inflammation occurs in response to the oligodendrocyte cell death.
http://www.mult-sclerosis.org/news/Mar2004/FaultyImmuneSystemMayNotBeCau seofMS.html
Here is working link: http://www.mult-sclerosis.org/news/Mar2004/FaultyImmuneSystemMayNotBeCauseofMS.html
Treatment of multiple sclerosis: beyond the NICE guidelines
This article also implicates that MS is not primarly autoimmune disease.
http://qjmed.oxfordjournals.org/cgi/content/full/98/5/373#SEC3
Alessandro, I agree with you completely I have been researching this for over 13 years now because it always seemed to me that the reason a cure was never found is because the cause they were looking at was alway wrong. There is too much money (10s of billions at least) and too many jobs (hundreds of thousands at least) would be lost if they started looking in the right direction.
Please refer to my blog for some of my findings: http://yourverity.wordpress.com/
Sharon, thank you for your kind comment about the Myelin Repair Foundation.
Dr. Stachowiak, a great article and great point you’ve made. MS research has relied heavily on the EAE model and yet virtually every therapy that worked in EAE has not been successful in the clinic.
Conversely Tysabri didn’t work very well in the EAE model but has been very successful in people with MS.
The Myelin Repair Foundation is always keeping in mind that animal models are just that, models, not the real human disease. While the MRF does use two different EAE models we are very conscious of their limitations. Because of those limitations we also use other animal models that do not rely on activated T cells to damage myelin.
The referenced article makes a very good point that the immune response in MS, while it certainly causes significant damage in MS, may not be the underlying cause of the disease.
At this point, we are remaining open minded about what causes MS and are willing to recognize the value of alternative hypothesis.
Sincerely,
Rusty Bromley
COO
Myelin Repair Foundation
To: Alesandro: Thanks, I agree entirely.
To: Yellowgenius: Thanks for the extra information
To: Rusty Bromley: Good to hear about “openmindedness”. I hope repairs are achieved before billions of all kinds of anilmals, what researchers call “models” are abused, and to arrive at the conclusion that it is not replicable in human beings.
PS I believe in science and its contribution to progress and have MS since 22 years!
Well friends, if we want MS science to become more effective, we need to hold MS researchers accountable.
A group of researchers in Italy is proposing a revolutionary new theory about Multiple Sclerosis. They’ve offered some compelling evidence that MS is primarily a vascular disease, and that the neurologic damage seen in MS patients has its genesis in blood flow problems within the veins of those patients. They’re calling this theory Chronic Cerebrospinal Venous Insufficiency, or CCSVI for short.
The Italian researchers, led by Dr. Paolo Zamboni, imaged the veins leading from the brain and spinal cord of several hundred MS patients, and found that virtually all of them showed evidence of a narrowing or blockage of these vital vascular pathways. Specifically, they found blockages or stenosis in the jugular and/or azygos veins of the MS patients they studied, findings not seen in healthy control subjects or in patients with other vascular or neurolgic conditions.
These researchers theorize that these blockages constrict the flow of blood leaving the central nervous system, causing a reflux of blood back into the brain and/or spine. This reflux leads to edema and inflammation, which in turn leads to an immune response, which then leads to the lesions that are the hallmark of Multiple Sclerosis.
A group of patients who congregate online at ThisisMS.com have become convinced that there is significant merit to this theory.http://www.thisisms.com/forum-40.html
One of these patients managed to contact a highly respected vascular doctor at Stanford University, Dr. Michael Dake,. who looked over the research materials and agreed that there might indeed be something to this radical approach.
Dr. Dake and his colleagues have themselves begun imaging the vascular systems of MS patients, and have found results similar to those of the Italian researchers. The Stanford group has gone so far as to start surgically clearing the blocked veins of MS patients, by placing stents at the sites of the blockages.
The researchers in Italy have also been clearing the blockages that they’ve found, and plan on holding a news conference announcing their findings and results sometime early this summer.
Read more: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2647682
A group of researchers in Italy is proposing a revolutionary new theory about Multiple Sclerosis. They’ve offered some compelling evidence that MS is primarily a vascular disease, and that the neurologic damage seen in MS patients has its genesis in blood flow problems within the veins of those patients. They’re calling this theory Chronic Cerebrospinal Venous Insufficiency, or CCSVI for short.
The Italian researchers, led by Dr. Paolo Zamboni, imaged the veins leading from the brain and spinal cord of several hundred MS patients, and found that virtually all of them showed evidence of a narrowing or blockage of these vital vascular pathways. Specifically, they found blockages or stenosis in the jugular and/or azygos veins of the MS patients they studied, findings not seen in healthy control subjects or in patients with other vascular or neurolgic conditions.
These researchers theorize that these blockages constrict the flow of blood leaving the central nervous system, causing a reflux of blood back into the brain and/or spine. This reflux leads to edema and inflammation, which in turn leads to an immune response, which then leads to the lesions that are the hallmark of Multiple Sclerosis.
Read more: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2647682
http://www.wheelchairkamikaze.com/2009/05/is-ms-actually-vascular-disease.html
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A group of researchers in Italy is proposing a revolutionary new theory about Multiple Sclerosis. They’ve offered some compelling evidence that MS is primarily a vascular disease, and that the neurologic damage seen in MS patients has its genesis in blood flow problems within the veins of those patients. They’re calling this theory Chronic Cerebrospinal Venous Insufficiency, or CCSVI for short.
The Italian researchers, led by Dr. Paolo Zamboni, imaged the veins leading from the brain and spinal cord of several hundred MS patients, and found that virtually all of them showed evidence of a narrowing or blockage of these vital vascular pathways. Specifically, they found blockages or stenosis in the jugular and/or azygos veins of the MS patients they studied, findings not seen in healthy control subjects or in patients with other vascular or neurolgic conditions.
These researchers theorize that these blockages constrict the flow of blood leaving the central nervous system, causing a reflux of blood back into the brain and/or spine. This reflux leads to edema and inflammation, which in turn leads to an immune response, which then leads to the lesions that are the hallmark of Multiple Sclerosis.
Read more: http://www.wheelchairkamikaze.com/2009/05/is-ms-actually-vascular-disease.html
Time to update folks about ccsvi based on recent meeting in Bologna, Italy. Dr. Zamboni’s work could really be breaking new ground in looking at MS as a vascular disease that requires a multi-disciplinary team of neuro-radiologists, vascular surgeons, and neurologists to treat and reversed MS. U of Buffalo’s Jacobs Neurological Institute will the the major US site for 1,700 subject research study. Look into it!