An Article from 2003- questioning MS as autoimmune

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

An Article from 2003- questioning MS as autoimmune

Postby cheerleader » Wed Mar 31, 2010 7:47 pm

A neurologist, Professor Behan, took on the MS world back in 2003 , by writing papers questioning the autoimmune theory and the efficacy of MS drugs. Here is an article written by Jerome Burne for the Times-
MS: a radical view

In a highly controversial attack on the conventional approach to MS, published last November in the Journal of the Royal College of Physicians of Edinburgh, Professor Peter Behan, a neurologist at Glasgow University, claimed that the effectiveness of the most widely prescribed drug — beta interferon — was no better than a placebo. Last month two separate studies, one published in the BMJ and the other in The Lancet, raised questions about the effectiveness of beta interferon. While noting a modest effect in reducing the number of relapses, the reports concluded that there was no reliable data for its effect beyond a year, which is quite a problem for a drug treating a lifelong disease.

Behind this debate over drug effectiveness is an increasingly bitter argument about the origins of multiple sclerosis. It is a debate that has enormous implications, not only for the sort of research that should be done and how patients should be treated, but also for an ongoing legal argument involving millions of dollars about whether MS can be brought on by certain sorts of physical trauma, most significantly whiplash in a car crash. Under the autoimmune model such a link makes no sense, whereas if other causal factors are involved the trauma theory gains credence.

Professor Behan, who has testified in the courts to the possibility that trauma triggers a predisposition, outlined a range of criticisms of autoimmune theory in his paper. One involves the animal model used by researchers to study the disease. The model is created by injecting vaccine-like substances into the brains of mice, which cause them to have an autoimmune reaction that damages their myelin sheath.

But Professor Behan is not alone in his thinking. As well as the recent reviews of beta interferon, a paper due out later this month from Dr Massimo Filippi, of the Istituto Scientifico Universitario Ospedale San Raffaele in Milan, casts doubt on one of the basic assumptions of the autoimmune theory. Dr Filippi scanned the brains of patients with early symptoms of MS and found not only signs of extensive damage to neurones, but also that this was “largely independent of what inflammation can be detected”.

In other words, damage doesn’t develop gradually driven by autoimmune inflammation, but is both there at the beginning and not obviously linked with inflammation.

Which brings us to the key question: why do people get MS, if not because of a rogue immune system? We still do not know, but Professor Behan, Dr Filippi and others believe that it is worth looking elsewhere, possibly at metabolic change leading to neurodegeneration, which then might be slowed down or halted.


Perhaps someone needs to contact Professor Behan and see if he is aware of Dr. Zamboni's discovery of jugular stenosis and CCSVI. Certainly whiplash could fit into this theory....
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Wed Mar 31, 2010 8:04 pm

Nice Cheer!
Behan and Chaudhuri often write together and are people whose work I enjoy keeping track of.

There are some talented researchers who have long ago questioned the AI paradigm. I have long followed the work of Prineas, Barnett, Chaudhuri, and Behan...these people are some who have questioned it strongly. Chaudhuri did a paper in 04 that is nothing short of scathing. Multiple Sclerosis is not an Autoimmune Disease--in Archives of Neurology a comment. I don't think it is free...

MS is not an autoimmune disease

Critical paper by Chaudhuri alone on Tysabri
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby Ruthless67 » Wed Mar 31, 2010 8:14 pm

Great find again Cheerleader.

I see Dr Massimo Filippi, of the Istituto Scientifico Universitario Ospedale San Raffaele in Milan was at a conference in Nov. 2009 but I can't read anything but the date, lol. Maybe one of our Italian members will indeed contact one of them.

Marie,

I just read through the paper : Critical paper by Chaudhuri alone on Tysabri, damn that's some eye opening reading!

Lora
Last edited by Ruthless67 on Wed Mar 31, 2010 8:25 pm, edited 1 time in total.
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Postby cheerleader » Wed Mar 31, 2010 8:18 pm

MARIE!!! Let's get the band back together. I miss you. Hope you're well. Keeping busy? :wink:

I found this in the archives- it was written in 2003 by the gentleman who interviewed us for the Mail last year....the whiplash thing kind of leapt off the page. I see that Dr. Behan is retired now. Too bad. Thought it was interesting the same man spoke out against Behan in the UK, Dr. Alastair Compston, is the same person who is speaking out against Dr. Zamboni now. Maybe he will retire?? One can hope-
don't be a stranger,
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Husband dx RRMS 3/07
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Postby Billmeik » Wed Mar 31, 2010 8:26 pm

you know by 2003 a lot of us in the ldn camp didn't think ms was autoimmune. LDN boosts the immune system which would be a bad thing if strict autoimmunity was true. Really those were haywire days with interferons and 'flu like' symptoms that made you believe 'ya that's it my immune system is too strong' so you keep a running cold going. Hope those days are gone.

I was looking for some great papers that challenged the autoimmunity theory in those days but I can't find them fast. Apoptosis, or cellular suicide brought on by bad programming in the genes. The whole glial camp. There were lots of people that had other ideas.

I like ccsvi better.
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Postby Johnson » Wed Mar 31, 2010 9:52 pm

I have never believed the auto-immune thing either. It just never made sense with my history. For that reason, I have never had any interest in any of the drugs.

I have always thought that it was bacteriological, or parasitic (spirochete), and still believe there is a role for those. My own wild idea is that a parasite affects physiology in order to better it's environment, and survival. There are many parasites that do this, from fungii to bot flies, to wasps.

Incidentally, that case of the policeman in England, who won a settlement for "whip-lash induced" MS, was overturned on appeal not too long ago. I have read more than one account of chiropractic adjustments from the Atlas to C2 relieving MS - which backs the trauma-based idea, and CCSVI.
My name is not really Johnson. MSed up since 1993
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Postby costumenastional » Thu Apr 01, 2010 12:04 am

I ve met an ms patient while i was in hospital a year ago. His MS was triggered by a head trauma in a car accident. He was in for 6 years and he was in a really bad shape. I remember asking myself how on earth the immune system could do that if it wasnt for some kind of pathologc malfunction. It is obvious now that his brain veins where seriously damaged. And instead of microvascular surgery (way too difficult to happen) they put him on Tysabri...For some strange reason i cannot stop thinking that "they" know about vascular issues and MS for quite some time.

While we all hope Compston will retire soon enough, we shouldn't forget Alasdair Coles. I suspect he is going to fight hard to keep things going with campath. After all, both of them spent the last 15 years of their lives on its development. Genzyme's stock hit the roof and campath is to hit the market soon. Can you imagine what will happen when CCSVI proves true?
We are talking BILLIONS not millions... For that alone, i get why they are against.

Compston is the most well know MS reasearcher in the UK and Coles is following his lead. I d say they are both great scientists and caring doctors but maybe their ego has expanded a bit more than it should.

I remember Coles's answer when he was asked about CCSVI. He just said: "we know MS is autoimmune because when we give patients immune suppressants they get better". This is far from an educated answer i d say. He forgot to mention that every single substance given to us MAY have a modest effect ONLY on out relapse rate and nothing more.
Compston went further, saying CCSVI is nonsense.
I guess they are afraid. At least i hope they are.

I have had campath myself and Dr Coles was-is kind enough to always reply to my emails offering valuable advice but it s time for us to go on.

It s time for us to be liberated.
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Postby Salvatore24 » Thu Apr 01, 2010 12:37 am

There just seems to be too many coincidences with:

- Treatments to suppress the Immune system NOT working as they should
- LDN being fairly effective
- Swank diet & exercise delaying progression
- Inclined Bed Therapy

Good find on that article cheer.
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Postby sbr487 » Thu Apr 01, 2010 3:12 am

Guys, in all this don't forget the difference between auto-immune and natural immune response. CCSVI itself makes it very clear that immune response is the reason for MS playing havoc. But the response is a natural response and not unknown auto-immune ...
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Postby thornyrose76 » Thu Apr 01, 2010 12:08 pm

The nurse at my MS CLINIC in winnipeg told me about 2 yrs ago, that "the injection drugs weren't as effective as we first thought." I was on BESTASERON for about 4 years. I stopped taking it bc I could tell it wasn't working and I felt worse after taking it. I had to debate with my neuro for about 3 min as to whether I should take it or not, she would say "what do you want to do? me- "I don't know im not the doctor." ABack and forth until she admitted-- "Well,, it doesn't seem to be working." I stopped taking it.
The doctor was Maria Melanson.
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Postby msgator » Thu Apr 01, 2010 12:36 pm

one of the side effects of copaxone is vasodilation. maybe that is how it helps.
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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Postby cheerleader » Thu Apr 01, 2010 12:44 pm

msgator wrote:one of the side effects of copaxone is vasodilation. maybe that is how it helps.


I agree, gator....I brought that up last summer, and Marie (lovingly) swatted me :)

http://www.thisisms.com/ftopict-7393-co ... sodilation

...but I still think there's something there. Who knows? They still don't really know how it works.

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby fogdweller » Thu Apr 01, 2010 12:51 pm

costumenastional wrote:I remember Coles's answer when he was asked about CCSVI. He just said: "we know MS is autoimmune because when we give patients immune suppressants they get better". This is far from an educated answer i d say. He forgot to mention that every single substance given to us MAY have a modest effect ONLY on out relapse rate and nothing more.


GREAT THREAD, CHEER! You never fail to amaze and impress me! Keep up the good work.

What noone has brought up so far is the involvement of progression. Even if you believe that the reduction of Relapses is due to the immune supresson of the beta interferon, which is questionable, it admittedly has no affect on progression. And in the long term, isn't that what matters?

I have PPMS and have never had a relapse in my life, but I have been steadily progressing for 35+ years. All the money and focus spent on the blind alley called autoimmunity has frustrated me, and I am hopeful that now there is a shift in focus to something that will help me and all the other SPMS sufferers. I don't fault the researchers and experts who truely believed that the disease was a complex autoimmune disorder, although I have never believed it. However to fight against alternative theories and poo-poo legitimate data and inquiry is inexcusable. I understand how personal financial incentive plays into this, but we should try to avoid that as much as we can.
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Postby 4MyUms » Fri Apr 02, 2010 2:22 pm

Cheerleader

Firstly many many thanks for all the fantastic work you are doing and sharing with us all regarding CCSVI.

This is my first time posting and am doing so as a cheerleader myself for my partner who has been diagnosed with RRMS fro 6 years now. The article you posted particularly resonated with me as he was in a terrible car accident when he was 19 (diagnosed when he was 26). The car completely flipped over and he had a serious upper arm injury/break that required surgery.

The arm is fine now, but of course the MS progresses. Perhaps to add credence to the whiplash theory, is the fact that he is Asian and was raised in South East Asia, so not seen as having the typical propensity to develop MS. Further, could the speculative whip lash theory also explain why MS appears to be a predominantly Western disease (ie up until recently, cars were mainly found in the West). All just total speculation, but thought I'd throw it all in the mix !

Thank you again for all your insights.
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Postby cheerleader » Fri Apr 02, 2010 9:42 pm

4myums-
I think a bad car accident could certainly exacerbate a stenosis, or worsen CCSVI. I hope there are some answers for your sweetie--and you.

Funny story. After I posted this, I realized it was written by the same chap that interviewed me for the Mail last year. I e-mailed him and asked if he stayed in touch with any of the docs he had interviewed in '03 for this story. He gave me Dr. Chaudhuri's info, so we'll see if he's heard about Dr. Zamboni's research. BTW, Jerome is looking for a British angle to take on the CCSVI story....is any progress being made in finding doctors to look at it in the UK? Any advocacy groups want to be interviewed. Post on here-
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http://ccsviinms.blogspot.com
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