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Posted: Sun Nov 14, 2010 1:34 pm
by Cece
jimmylegs wrote:Early Adopters
This is the second fastest category of individuals who adopt an innovation. These individuals have the highest degree of opinion leadership among the other adopter categories.
Would this be the category for anyone going for CCSVI treatment now? I don't feel we're quite as pioneering as the summer of '09 folks!

Posted: Sun Nov 14, 2010 1:38 pm
by dreddk
jimmylegs wrote:it all reminds me of marketing class a million years ago..

adopter categories:....
.
Cognitive Ethology has an interesting classification which could be adataped as:

Slayers: CCSVI is false and nothing will convince them otherwise.

Skeptics: Balanced and open-minded approach to CSSVI research

Believers: CCSVI exists and nothing will convince them otherwise.

Posted: Sun Nov 14, 2010 2:22 pm
by scorpion
dreddk wrote:
jimmylegs wrote:it all reminds me of marketing class a million years ago..

adopter categories:....
.
Cognitive Ethology has an interesting classification which could be adataped as:

Slayers: CCSVI is false and nothing will convince them otherwise.

Skeptics: Balanced and open-minded approach to CSSVI research

Believers: CCSVI exists and nothing will convince them otherwise.[/quote}


For the most parts skeptics and slayers have been lumped together on here.

Posted: Sun Nov 14, 2010 2:51 pm
by patientx
the thousands of MS patients treated who HAVE seen significant improvement.
Where does this figure come from? Not too many threads ago, people were arguing whether it was 1, 2 or 3 thousand people who had been treated. Now, it's up to thousands who have seen significant benefit.

Posted: Sun Nov 14, 2010 4:14 pm
by Cece
patientx wrote:
the thousands of MS patients treated who HAVE seen significant improvement.
Where does this figure come from? Not too many threads ago, people were arguing whether it was 1, 2 or 3 thousand people who had been treated. Now, it's up to thousands who have seen significant benefit.
What I took from that thread was that it was over 3,000 people treated. This was from a webcast - Dake or someone else - and fit with what we were approximating as well.

Take that 3,000 and apply Siskin's rule of thirds (a third 'wow' improvements, a third minor gradual improvements, a third no improvements) and consider that minor gradual improvements in a progressive neurodegenerative disease count in my mind as significant and...2/3rds of 3,000 is 2,000 with significant benefits. So, yes, I would agree with thousands, but just barely, estimated and approximated.

This will all be easier with some registry data.

Posted: Sun Nov 14, 2010 4:14 pm
by CureIous
dreddk wrote:
jimmylegs wrote:it all reminds me of marketing class a million years ago..

adopter categories:....
.
Cognitive Ethology has an interesting classification which could be adataped as:

Slayers: CCSVI is false and nothing will convince them otherwise.

Skeptics: Balanced and open-minded approach to CSSVI research

Believers: CCSVI exists and nothing will convince them otherwise.
Slayers are certainly a distinct and easily classified category. CR is our picture in the dictionary next to it.

Skeptics MAY be "open minded and balanced", but how to classify a particular skeptic as such? This creates an absolute which cannot be proven or disproven, it's merely an opinion, nothing else. There's so many subsets, just like MS and CCSVI, and no person would ever say, "I'm not balanced and open-minded".

Believers, oh really, so now believers are subject to the diametric opposite of the all-too-positive sounding "balanced and open minded", with no subset, differing categories, no compromise whatsover, they merely "believe", and by adding on the "nothing will convince them otherwise", then the label shouldn't be believer, but zealot.

So your choices now are close-minded slayers who's minds are made up on the winner of the race before the horses are at the track.

In the middle, we have the austere and open minded, 100% balanced and fair logical scientific skeptics, who are neither for, nor against, until as such time categorical empirical proof presents itself in such a fashion, as to be 100% against reproach. I've yet to see any of these creatures, but I'm sure they exist.

And finally, if the above two are not of one's taste or inclination, then only die-hard zealot ergo "believer" (whatever that means, believe in what exactly, a hypothesis, doesn't sound criminal to me) , or maybe these elusive internet creatures I hear so much about, that carry about torches and openly search for non-zealots to burn at the stake.

This only works if you can find enough incidences of the above extremes to impugn the nature of the "movement" (used very loosely here).

Most people are not. They fall somewhere in the middle in between the second and third example, and the first example doesn't have much motivation to stick around in the first place.

Posted: Sun Nov 14, 2010 4:24 pm
by dreddk
Curious, I agree. Its a spectrum, not an absolute and I would say there are people across the spectrum on TIMs. I think the interesting aspect is that true Skeptics are the middle of the road, not Slayers as some have been effectively labeled.

Posted: Sun Nov 14, 2010 4:27 pm
by Cece
CureIous wrote:There's so many subsets, just like MS and CCSVI, and no person would ever say, "I'm not balanced and open-minded".
But others will say it of them....

We just have to rename the middle category. There is a difference between being a diehard believer, who would not give up on CCSVI even if Zamboni himself proved it wrong, and a believer who open-mindedly weighed the evidence and agrees with CCSVI but would reasonably change his mind if the evidence shifted against CCSVI.

Extremist no
Belief/Disbelief based on evidence
Extremist yes

Posted: Sun Nov 14, 2010 4:41 pm
by jimmylegs
cognitive ethology is "the comparative and evolutionary study of nonhuman animal (hereafter animal) thought processes, consciousness, beliefs, or rationality"

slayers "frequently mount philosophically motivated objections to the possibility of learning anything about animal cognition."

even if we were talking coyotes, rather than a technology situation, i don't think we have any slayers here at TIMS :)

Posted: Sun Nov 14, 2010 4:46 pm
by jimmylegs
more on the coyote question:

Proponents: Proponents recognize the utility of cognitive ethological investigations... Some proponents are as extreme in their advocacy of cognitive ethology as some slayers are in their opposition.

Posted: Sun Nov 14, 2010 4:47 pm
by dreddk
Jimmylegs Haha yes I wasn't implying we were animals. I just thought it served an interesting analogy

Posted: Sun Nov 14, 2010 4:48 pm
by CureIous
Cece wrote:
CureIous wrote:There's so many subsets, just like MS and CCSVI, and no person would ever say, "I'm not balanced and open-minded".
But others will say it of them....

We just have to rename the middle category. There is a difference between being a diehard believer, who would not give up on CCSVI even if Zamboni himself proved it wrong, and a believer who open-mindedly weighed the evidence and agrees with CCSVI but would reasonably change his mind if the evidence shifted against CCSVI.

Extremist no
Belief/Disbelief based on evidence
Extremist yes
Exactly. I am 100% "in the bag" for stents.

Specifically 4 stents. 3 on the right side of my neck, 1 on the right side.

But if those stents went into someone elses neck or elsewhere, I would then ask them "are you for or against?", because I would not dare to TELL them WHAT they were. Perhaps they had a bad experience and are against. I allow the freedom to express that, it is a valid argument from their POV.

Some may say "hell no, angio all the way hurrah!". Fine, go for it, I'll drive you to the clinic myself and pick you up afterwards, I certainly wouldn't feel a need to convince you of your need for stents, I may ask a few questions about it, like, "have you considered stents" and such, but not with a proselytizing tone.

Some may say, "you aint touching my body til I feel as safe as I can possibly be about the subject". Great, then wait. Good for you, don't do anything you feel uncomfortable with, there's too much at stake here. (And here's a few links to educate yourself in the meantime, warnings included).

Somehow the above groups get systematically swept up into the scientific world's criteria. Stasis is the best place for some right now, they have the luxury of time on their side. Some don't. We all know that.


Somehow, it has become commonplace to sweep the positive results group into the "not so believeable due to bias" category, contrasted with the negative results category which NOBODY questions, ever. Nor should they. Who am I to tell someone they DIDN'T have a bad experience? I might say to wait a few months, as some are in a rush to thumbs up/down in 48 hours, and that's simply not enough time to know one way or the other. It could go sideways, give it time. It could get better, give it time. You knew that going in, this was a long-haul approach not a one-shot cure.

So all this talk about the bad experiences not being "shouted from the rooftops" is utter nonsense. There's an entire facebook group devoted to such, there's humongous threads here devoted to such. Every single article on CCSVI I have EVER seen, since 2009, begins or ends with the negative stuff. The headlines alone are enough sometimes to halt people in their tracks. Talk about shouting from the rooftops, don't get no bigger than worldwide media vs. message board postings eh?

Posted: Sun Nov 14, 2010 4:58 pm
by jimmylegs
cece yes i think i'd say summer 09 patients could be considered the innovators... and now we're possibly into early adopters. everyone can decide for themselves where they think they fit, it's not like we have all the data available so that we can plot the s-curve and tell for sure :)
i wonder how all this will look from 2110.

Posted: Sun Nov 14, 2010 5:22 pm
by CureIous
jimmylegs wrote:cece yes i think i'd say summer 09 patients could be considered the innovators... and now we're possibly into early adopters. everyone can decide for themselves where they think they fit, it's not like we have all the data available so that we can plot the s-curve and tell for sure :)
i wonder how all this will look from 2110.
There is some attempts at plotting. I tried plotting in July 2009. There were like 3 dots on the plot lol.

I really really really do not envy people right now in the grey zone. This could go either way, but anecdotal is the only thing available right now, and there's more than enough of that to keep one occupied for some time, and thoroughly confused I'm sure. When I see the newbies (not necessarily just on here) ask about numbers pro/con to try to hedge their bets, I feel sorry for them, I really do. The only sure-fire hedge at this point is to do nothing and wait. Sure, we have numbers and percentages which may or may not apply to your situation depending on the modality and location and experience of the attending Dr. and so many other variables, it's hard to tell someone "don't waste your time", but that's about the best answer I think for them. To get out a piece of paper and put a Should/Shouldn't column, then an x for the positive experiences and one for the negative experiences will be an utterly futile endeavour, at the end you will be no further ahead than when you started. You have no way of knowing empirically that you have the appropriate number of x's in either column so why bother?

Mind you I'm specifically speaking of basing a decision solely on the above sans any true investigation, which goes without saying should be the first thing done. Just that the above isn't going to help push you either way, and if it does, then you haven't done enough homework and shouldn't do anything.


We see the same thing on here with a collection of negative reports from the same clinic in Poland. I wouldn't know whether to base upon that or not, depends. If that was the ONLY info I had, boy there would be no hesitation to get a refund for my airline ticket. Were there 797 successes prior to that? Is it a cluster? What's the real info? I believe every word they say to be sure, but is it statistically significant? Enough info to sound dire warnings worldwide and bring it all to a screeching halt?

Posted: Sun Nov 14, 2010 5:39 pm
by andisue50
jimmylegs wrote:it all reminds me of marketing class a million years ago..

adopter categories:

Innovators
Innovators are the first individuals to adopt an innovation. Risk tolerance has them adopting technologies which may ultimately fail.

Early Adopters
This is the second fastest category of individuals who adopt an innovation. These individuals have the highest degree of opinion leadership among the other adopter categories.

Early Majority
Individuals in this category adopt an innovation after a varying degree of time. This time of adoption is significantly longer than the innovators and early adopters.

Late Majority
Individuals in this category will adopt an innovation after the average member of the society. These individuals approach an innovation with a high degree of skepticism and after the majority of society has adopted the innovation.

Laggards
Individuals in this category are the last to adopt an innovation.
Cool! This is a very good analysis. I'm an Early Adopter and quite comfortable with that label! Thanks 8)