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Wednesday, November 7, 2012 10:14 PM | CCSVI in Multiple Sclerosis Volg link

One of the important stories in last night's US political election was the perfect modeling of the electoral outcome by statistician and numbers geek, Nate Silver.  Nate told us how the electoral map was going to look, and he was right in every single state.  That's right, he was 50 for 50.  Many of us have been following Nate's blog on the NY Times, FiveThirtyEight.

link to fivethirtyeight

What does this have to do with CCSVI??  And are you spiking the football, Joan?  No!  This is not a partisan post.  It's not about politics.  I'm not talking about the outcome of the election.  I'm going to discuss statistics, and how numbers are useful as data, and much better than opinion.  And right now,  we have too much punditry in MS research.   We'll get to CCSVI, but first, let's understand what Nate does.

But... how does he do it?

Using... math. Silver's "secret" is a proprietary statistical model of presidential elections — basically, a numerical "election simulator" based in part on past elections. He runs the model thousands of times every day, using the latest numbers — polling figures and economic data, mostly — and watching who wins more often, and how frequently. The model's results are converted into percentages: when Silver wrote that Obama had a 90.9 percent "chance of winning," he means that Obama won 90.9 percent of the times that Silver ran the model with the most recent data. 

Silver got his start as a statistician and blogger in the world of baseball, where he came up with another proprietary model — PECOTA — that used past data to predict given baseball players' performances. Then, as now, he was a member of a new, nerdy cadre of writers in a field hostile to the kind of myth-busting data-driven work he was doing — and as several people have noted, Silver and the "sabermetricians" ended up winning over much of baseball media.

link

The thing that's different about Silver, compared to the pundits we heard in the media, is that he doesn't interject his opinion into statistical analysis.  He just collects data and uses math.  Many pundits were angry with Silver, because they claimed he was biased towards the president's re-election campaign.  But he kept stating, it wasn't about personal opinion, it was about the numbers.

When we make a statistical model, without imposing our personal views, we can often see reality.

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Weather forecasters have used statistics to great effect---most recently, these projections helped model hurricane Sandy, and allowed government officials to get advance warning out to the areas most likely to be affected by this monster storm.  Weather modelers knew that the Atlantic Ocean was much warmer, and have been forecasting these types of storms using a mathmatic model and statistics.  When they saw Sandy heading up the coast, and the cold air coming from the north, they knew there would be trouble.  Again, it's not about what we personally think about the reality of warmer oceans or climate change....it's what the numbers show.

link

Nate Silver writes about this reality in weather forecasting in his new book, The Signal and the Noise.

We learn about a handful of successes: when, for instance, meteorologists predict a hurricane’s landfall 72 hours in advance, they now come within a 100-mile radius, whereas the radius was 350 miles a quarter-century ago.

link  

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Right now, there are many neurologists claiming that CCSVI is dead in the water, because they have not been able to detect it.  But I propose that we need to look at the real numbers and statistics coming from the studies.  A meta-analysis is only as good as the numbers that go into it.  If a meta analysis uses preconceived biases (that MS is autoimmune and CCSVI is bunk) or incorrect measurements (doppler tests which utlize valsalva manuever and no transcranial testing) --we find that garbage in equals garbage out.  That's not science.  The recent COSMO doppler study in Italy was a sad example of this "punditry."  

Neurologists have a credo or belief system--and much like the pundits who were decrying Nate Silver last week-- they believe this reality at any cost, even when the facts dispute their beliefs.  They have invested decades into the EAE model, and billions and billions of dollars ride on their theory.

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Here is Dr. Zamboni, commenting on the fact that most of the neurological "research" into CCSVI is not true science, but rather full of opinion.

In a recent article in MedScape discussing the OPINION of Dr. Compston that new genes found in MS implicate the immune system only, and preclude a vascular connection,  Medscape asks Dr. Zamboni for his comments on this new research and the recently published negative review by Dr. Bagert.

Asked to comment on the review by Dr. Bagert and colleagues, Dr. Zamboni expressed some exasperation that the review again does not represent actual new evidence, but is a review, including opinion pieces.

"Until a few years ago, the Archives of Neurology had a section of great interest [called] Controversies, where the reader had the opportunity to consider different visions," said Dr. Zamboni, who is director of the Vascular Diseases Center at the University of Ferrara, Italy.

"Nowadays, countless editorials and opinion articles about CCSVI have been invited in journals of clinical neurology with no chance to reply. This habit, certainly not academic, helps to make me a defendant in science, just to get reported in 30 peer-review articles an underdeveloped aspect of MS research," he told Medscape Medical News.

link to note

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Here's a great meta analysis of the CCSVI doppler studies, put together by Al Ossorio, the science writer at CCSVI Alliance.  Now, you may say, doesn't the Alliance have a bias?  Of course they do.  But Al stepped back, took out his opinion, and just compiled the numbers of all of the CCSVI doppler studies completed through 2011.  Even the ones that weren't conducted according to Dr. Zamboni's protocol.  

And the majority of the evidence shows that CCSVI exists.

link to The Great Debate

Here is Al Ossorio explainng the confusion in understanding CCSVI studies.

New theories often enter the scientific discourse amid a flurry of conflicting data. In fact, inconsistencies or gaps in the data often spur the development of new theories to begin with.

Further, during early stages of research, results may be particularly confusing. Consider, for example, the decades-long debate and starkly differing research results on the link between smoking and lung cancer. Thus, we should not be surprised that research on CCSVI has produced conflicting results.

Studying CCSVI is complicated. Diagnosis requires expertise in a particular application of Doppler sonography and, in the best cases, catheter venography, vascular science and neurology, together with a deep understanding of CCSVI theory. 

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Many neurologists have claimed that we're a bunch of gooney, social-media loving, cult joining believers.  That we don't know how to utilize peer-reviewed studies or read medical journals.  Well, that's just more garbage.  And it's a way to provoke controversy and mute science.  

We owe it to all people with MS to understand what CCSVI means in neurodegenerative disease, whether this can be helped with venoplasty, or lifestyle, nutrition and exercise,  and what this means to all living with MS, NPH, Parkinson's, Alzheimer's, dementia and brain atrophy.

Blood flow matters.  Science matters.  I promise to keep bringing you the research into MS and CCSVI.  

And I'll try to keep opinions to myself....but no promises.  :)

Joan