This Is MS Multiple Sclerosis Community: Knowledge & Support

This is an interesting book. Just think about where we are in CCSVI research when you read the excerpts and it sheds some light on the subject of research and published reports. Both Pro & Con the CCSVI Theory.

What a great find, Ruthless !!! I'll have to see if I can find this book. Have you read "How Doctors Think" ? Another must read for any patient.

ozarkcanoer

thanks

Ruth--this is fantastic. Gonna put it up on the Facebook wall. We're going thru the medical panel members on the CIHR in Canada that recently voted unanimously to not fund CCSVI trials and finding an autoimmune consensus there. This quote will help folks understand how group think can squash curiosity--
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I say what is the point of higher education and going to college to become"an expert" in anything when you are actually just becoming part of the problem.However I COMPLETELY agree with this part of the book...


"Once a majority opinion is formed, even highly competent, confident people are reluctant to voice opinions that go against it, Freedman reports.

Wrong reports that groups amplify bias, squash minority points of view and can even overcome the correct point of view when it’s the majority view. “In most situations, truth doesn’t win out in groups."

Yes there are problems in the scientific community. However it is more a problem when people come onto internet forums like this one and act like experts. Heck I guess if you act like an expert long enough people actually start to believe you are one!

Thanks, Lora

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A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck

BMJ. 2001 April 14; 322(7291): 879–880.

Copyright © 2001, BMJ

Any casualties in the clash of randomised and observational evidence?
No—recent comparisons have studied selected questions, but we do need more data

John P A Ioannidis, associate professor and chairman
(Email: jioannid@cc.uoi.gr)
Anna-Bettina Haidich, research fellow

Clinical Trials and Evidence-Based Medicine Unit, Department of Hygiene and Epidemiology, University of Ioannina School of Medicine, Ioannina 45110, Greece

Joseph Lau, professor
Division of Clinical Care Research, Department of Medicine, New England Medical Center, Tufts University School of Medicine, Boston, MA 02111, USA


Randomised controlled trials and observational studies are often seen as mutually exclusive, if not opposing, methods of clinical research. Two recent reports, however, identified clinical questions (19 in one report,1 five in the other2) where both randomised trials and observational methods had been used to evaluate the same question, and performed a head to head comparison of them. In contrast to the belief that randomised controlled trials are more reliable estimators of how much a treatment works, both reports found that observational studies did not overestimate the size of the treatment effect compared with their randomised counterparts. The authors say that the merits of well designed observational studies may need to be re-evaluated: case-control and cohort studies may need to assume more respect in assessing medical therapies and largescale observational databases should be better exploited.1,2 The first claim flies in the face of half a century of thinking, so are these authors right?

The combined results from the two reports indeed show a striking concordance between the estimates obtained with the two research designs. A correlation analysis we performed on their combined databases found that the correlation coefficient between the odds ratio of randomised trials and the odds ratio of observational designs is 0.84 (P<0.001). This represents excellent concordance (figure). In fact, it is better than that observed when the results of small randomised trials and their meta-analyses were compared with the results of large randomised trials.3 To complicate matters, the concordance has been worse when the results of specific large randomised trials on the same topic were compared among themselves.3 Concato et al further observe that, for the five clinical questions they evaluated, observational studies for each question had very similar odds ratios between themselves,2 whereas the results of the randomised trials were often very heterogeneous. Popular wisdom has it that a “gold standard” method should give more or less the same results when repeated several times, while a poor method would suffer from lots of variability. So should observational studies be the gold standard instead of randomised trials?

Such a thought would be anathema to most clinical trialists.4 A closer inspection of the data suggests several caveats. Firstly, in six of 25 comparisons the 95% confidence intervals of the summary effect from observational studies does not include the summary point estimate of the randomised trials. Moreover, in three cases the pooled point estimates are in the opposite direction (one suggests harm, the other benefit); in two more cases one pooled odds ratio estimate is exactly 1.00, and the other documents benefit. So, perhaps concordance is not all that perfect, depending on how one looks at it.

Secondly, variability may be a blessing and not a nuisance. Variable results in randomised trials suggest that these trials have indeed managed to study diverse patient populations and treatment circumstances where the efficacy of a treatment may differ.5 Observational studies may tend to amalgamate large populations and reach average population-wide effects where there is less variability but where it is also more difficult to discern which patients are likely to benefit from an intervention.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1120057/?tool=pubmed

Wow triple post, new record.

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

Don't laugh, I just ordered my degree online...

I'm always curious about human nature. One thing I learned from my older friend at a younger age, was that if you act like you know what you are doing, people will be convinced with nary a question. This pretty much applies to all aspects of the o'sphere. To put it in print, is to print it in fact. Guess it then comes down to the rationale or merits of whatever is postulated, then again the bias rears it's ugly head, and supposed truth telling FAQ's and answers become the source of the propaganda, or more politically put, "the biased point of view". Then it is quoted and replicated and gains weight with each incarnation. I think we saw a lot of this in real time with the early stages of the drama that has become CCSVI.

Heck, I get mistaken for a store employee all the time when I'm shopping. People are always asking me where items are in the store.
Don't know why either, I think it's the tall thing for some reason. One time, a lady asked me for the location of a certain item, I said, "sure, that's right over here" and relived my younger years of working in a grocery store, where my manager taught me to walk the customer to the location of the product, don't just point in a general direction. So I did just that, walked the nice lady over to the proper location (can't recall what store it was), she thanked me and then realized that I wasn't an employee. Hey it was fun to "play the part" for a few minutes, no harm no foul, and I'm sure she thought better of the store on the way out regardless.

Not sure who I would brand as expert on anything with CCSVI, when even the treating physicians with experience say they don't know anything for sure.

Guess expert on the theory, history, all that wouldn't be an unfair categorization. That's not me, but some certainly fit the description.

It is true though, the minority POV usually gets drowned out by the group think, it's human nature to promote stasis with the group. The static mongers are then invited to join the leper colony outside the city limits...

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

This is a great find, thank you for this. I think the sooner we lose these stupid gold plated labels the better. There's no room in science for absolute thinking. Gold imparts just that, to the average Joe. It's okay for healthcare plans I guess, or life insurance, but anything as you posted with this much variability on both ends, both randomized and observational, cannot possibly then be "the gold standard", but it sounds good so we use it anyways. I think that particular phrase should be forever divorced from the medical field. Pretty soon the neuros will be telling us that the pill forms of their poison of the year is "the new gold standard in MS patient care".

This was a cool article. It's refreshing to see the ultimate test get tested itself. Since so many hundreds and hundreds of thousands of patient's destinies hang in the balance at this point, to now insist that an absolutely unassailable "gold plated" study is the only way to proceed (Hear me Oh Canada?), is to beg the question, "well as soon as I can find one that WAS unassailable to use as a model". Fact of the matter is, they all have their weak spots, plusses and minuses.

Which then begs the question why the two cannot run concurrently as two halves of the whole, in the same institution. Just make one arm the purely observational arm, the other is the RCT. I know, easy for me to say...

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap