Researcher's labour of love leads to Multiple Sclerosis breakthrough | Hacker News Reader

Researcher's labour of love leads to Multiple Sclerosis breakthrough

theglobeandmail.com

65 pointspg19 comments

recent update: http://www.nationalmssociety.org/news/news-detail/index.aspx...

"On February 10, 2010, the University at Buffalo Medical Center released a press release describing preliminary results from an ongoing study led by Dr. Robert Zivadinov combining the use of transcranial and extracranial venous doppler evaluation in people with MS and controls, with the aim of evaluating the prevalence of venous obstruction in people with MS. [...] The results reported are based on the first 500 participants in the Combined Transcranial and Extracranial Venus Doppler Evaluation study.

The preliminary results reported that at least 55 percent of the MS cohort participating in the initial phase of the study showed narrowing of the extracranial veins causing restriction of normal outflow of blood from the brain. This was also true for at least 22 percent of the healthy controls."

So it looks like the MS research community has significant interest in this, and that early reports from a larger study confirm an association between the disease and venous blockage.

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edit: and on the other hand...

http://medicalmyths.wordpress.com/2009/11/24/the-zamboni-myt...

That medicalmyths blog also rails against coronary bypass surgery.

I tried to find out who this Colin Rose is (as he lists no credentials whatsoever anywhere on the blog), and the only Colin Rose I found was a statistician with no medical training. (He also says MS symptoms are susceptible to the placebo effect; while this may be true, I doubt they could be cured by said placebo effect)

The entire blog seems even fishier than the trials Zamboni performed.

Yeah that blog smells pretty ripe to me, too. I don't trust invective. But it's worth knowing it's there if one is going to dig into this topic a bit further.

It says in the about page

>Colin Rose MD PhD, Cardiologist, Associate Professor of Medicine, McGill University

And there are questions about whether CABG really reduces mortality or not.

As for Zamboni's procedure, I was psyched about it until I read Rose's debunking, and then some posts in a forum for MS patients by someone who had the surgery and is still having problems with MS. I'm not going to say for sure that it's BS, but I'm skeptical.

As a doc, the more I read of Colin Rose's blog, the more I agree him. The more I read about Zamboni, the less I agree with him.

I read the original article from The Globe and Mail with much interest the first time it appeared on HN. I have now also read Colin Rose's assessment. Obviously it's pretty early days and I am all for being cautious and skeptical. I don't wish to submit a person I care about to an unproven procedure whose possible risks I know very little of. But to brand Zamboni as some kind of backwards witch doctor and call for no further investigation to even take place into this possible avenue of treatment seems beyond the pale to me. Surely this attitude must come from people who have not been personally affected by MS and/or have not had to watch someone they care about suffer from its bizarre, seemingly random and quality of life destroying symptoms.

I would be very interested in any further links you could provide in relation to the Zamboni treatment (e.g. you mention a discussion on a forum) either for or against.

Huh - his about page must have changed - or been fixed. All that was there when I looked was a listing of essays.

The U.S. society goes further, discouraging patients from getting tested or seeking surgical treatment. Rather, it continues to promote drug treatments used to alleviate symptoms, which include corticosteroids, chemotherapy agents and pain medication.

I can see not seeking surgical treatment, but getting tested does no harm, helps investigate this avenue of treatment, and gives the patient more information. And recommending pharmaceuticals... well, I've got a knee-jerk reaction to that.

I can't help but think that some of those organizations don't want these people to get this treatment, because if MS is a solved problem there will no longer be any need for these societies.

It may sound paranoid, but the same think happened to Mothers against drunk drivers. They so alienated the founder that she is (or at least was) a lobbyist for a alcohol company.

It is very sad.

"The goal of any organization eventually becomes to perpetuate itself."

(Not a direct quote, but the observation does not come from me. It's in that class of observations so cynical that they can't help but be true... and are. Note the "eventually", it's an important word. A few organizations have managed to avoid that fate for a long time, most succumb within a mere fifty or hundred man-years.)

Thank you, that was the sentiment I was trying to find.

It is also worth to point out that it almost never happens with the founder or even the original group that starts it. It almost always happens when the group get filled with holy warriors who go far beyond the original mission or when it gets filled with a bunch of rent-seekers.

The idea that iron buildup either causes or aggravates a bunch of other chronic diseases is one of those slightly-outside-the-mainstream theories that seems plausible to me and destined for increased acceptance.

Especially if you are of northern European descent, read up on 'hemochromatosis' -- and avoid 'iron-fortified' foods and vitamins unless medical testing shows a deficiency.

A) Hemochromatosis is a genetic defect, it has nothing to do with the health people who don't have the mutated gene.

B) The iron system has evolved with multiple mechanisms for storing excess iron and inhibiting uptake of excess iron.

C) Several forms of iron build-up are well documented, and none of them appear to have symptoms like MS.

Here's a good article on disorders of iron metabolism: http://content.nejm.org/cgi/content/extract/341/26/1986

I increasingly see the term 'hemochromatosis' used to describe damaging iron overload even when caused by factors other than the specific 'HFE' gene, such as other diseases (hereditary or not).

I also see a growing trickle of advice -- often from the kinds of cranks who sometimes turn out to be right -- pointing at iron exposure/accumulation, below levels that would result in a formal diagnosis of overload, as contributing to other chronic diseases and symptoms of aging. (Perhaps, the evolved mechanisms for iron regulation are optimized for 40-year lifespans, and not 80+-year lifespans.)

My layman's hunch is that the consensus view on iron will shift in coming decades. We'll see.

This is fantastic. I met a client a while ago and we took to each other warmly from the start. I found out she had MS. This is right up her alley, as she was explaining alternative treatments she tried which helped, although not yet endorsed by the U.S. I'm forwarding this to her right now.

Multiple Sclerosis, not Microsoft.

Good article from Nov. 20, 2009.

If this turns out to be affirmed by the medical establishment I hope that man gets the Nobel. It's exactly the kind of medical efforts we need more of: trying to CURE a disease, not just temporarily reduce symptoms via a pill sold for profit, a pill which in turn causes the patient other problems, which require more pills, and so on.

Pills sold for profit discovered by for-profit companies and pills sold otherwise by non-profit companies probably have the same curative rates. People like to demonize drug companies, but really, they are just confronted with terribly complex problems. You see pills that treat symptoms more often than pills that cure because of this complexity. On the road to a cure, there are many things discovered. They can be applied to make the patients life better in the interim -- and they should.

However, I agree whole-heartedly that this is the type of medicine that needs to be done more often. Researchers are victims of the "can`t see the forest for the trees" problem -- especially in medicine. There is a disconnect between bedside and lab bench that is artificial and limiting.

Interestingly, patients are starting to collaborate, swapping notes about things they remembered -- looking at things from an admittedly naive but certainly systemic approach. There are now even websites designed to help patients conduct what are almost emergent trials. (See: http://www.ted.com/talks/jamie_heywood_the_big_idea_my_broth...)

However, it should be noted that (thankfully) medicine is moving towards a more systemic approach.

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