
Researcher's labour of love leads to Multiple Sclerosis breakthrough - pg
http://www.theglobeandmail.com/news/national/researchers-labour-of-love-leads-to-ms-breakthrough/article1372414/
======
davi
recent update: [http://www.nationalmssociety.org/news/news-
detail/index.aspx...](http://www.nationalmssociety.org/news/news-
detail/index.aspx?nid=2206)

"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.

\---

edit: and on the other hand...

[http://medicalmyths.wordpress.com/2009/11/24/the-zamboni-
myt...](http://medicalmyths.wordpress.com/2009/11/24/the-zamboni-myth-ccsvi-
surreal/)

~~~
warfangle
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.

~~~
rsheridan6
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.

~~~
jonny_noog
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.

------
memetichazard
_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.

~~~
tomjen3
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.

~~~
jerf
"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.)

~~~
tomjen3
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.

------
gojomo
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.

~~~
niels_olson
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>

~~~
gojomo
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.

------
jeromec
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.

------
shrikant
Multiple Sclerosis, not Microsoft.

------
wglb
Good article from Nov. 20, 2009.

------
mkramlich
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.

~~~
chasingsparks
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...](http://www.ted.com/talks/jamie_heywood_the_big_idea_my_brother_inspired.html))

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

