Self-selecting bias for CCSVI

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby willowford » Tue May 03, 2011 11:25 pm

Cece wrote:
I think docs need to see these sites too, to see that at least there are many patients who like them still believe in objective evidence.

Thanks, willowford, I'd hope the docs would take a look at what we're doing here and on the Facebook site before making any unflattering conclusions. The social media aspect of CCSVI is a phenomenon, it is something altogether new, but I do not think of it as a bad thing. In general MS patients here at these sites are intelligent and capable. There is also a risk/benefit analysis that we all make and some are more comfortable with risk or more drawn to the benefit than others. We do the best with the information we have and I think we are all aware that we do not yet know all there is to know about CCSVI.

We might not have the answers but we have the questions and that is more than a start. :)

('What effect does CCSVI treatment have on MS progression?' HUGE question which I am personally invested in knowing the answer to.)


I know you are certainly very aware of all the research out there. But are others really open to the idea that we need to verify all this?

I started to suggest this idea that evidence is what we need - and I was met with very prejudicial view (about me of all people... as if I'm important! lol).

Were these ideas about research that outrageous? (I know you don't think so, that's your goal here; but maybe it's only well received by patients with MS - maybe people are less open to these ideas from patients with other problems?)
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Postby Cece » Tue May 03, 2011 11:37 pm

You came on strong, with something to teach us, which while well-intentioned it might have made some feel like you were not open to learning from us as well. Or for respecting us where we are at. It's ok. Stick around, we'll figure you out. :)
I know you are certainly very aware of all the research out there. But are others really open to the idea that we need to verify all this?

Here at TIMS, yes, I think so. We hash through the research ad nauseum at times. :)

I appreciated your analysis of Dr. Zivadinov's paper, you added some new concepts (specificity, sensitivity) to what had been discussed previously.
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Postby willowford » Tue May 03, 2011 11:57 pm

Cece wrote:You came on strong, with something to teach us, which while well-intentioned it might have made some feel like you were not open to learning from us as well. Or for respecting us where we are at. It's ok. Stick around, we'll figure you out. :)
I know you are certainly very aware of all the research out there. But are others really open to the idea that we need to verify all this?

Here at TIMS, yes, I think so. We hash through the research ad nauseum at times. :)

I appreciated your analysis of Dr. Zivadinov's paper, you added some new concepts (specificity, sensitivity) to what had been discussed previously.


My purpose certainly wasn't to teach anything. I said more than once, I'm nowhere near an expert when it comes to research. My aim was to advocate for research though. Others on this site have since told me that by advocating research, my words are going to be (mis)interpreted as being "anti-" something (I guess ccsvi even though my focus on research wasn't even that specifically).

I also thought that perhaps if we all understood how new findings are translated into clinical care, perhaps the next time a doc doesn't appear as enthusiastic about a new finding as we want, it might be clearer why from their perspective - ie They see new discoveries everday of their career - they see most of these don't stand the test of time - so over time they are less enthusiastic before lots of promising data is in.

I'm just tired of this stand-off btwn patients and docs. Both sides have a responsibiity in this as in every conflict. Just as a few oddball neurologists immediately dismissing a new theory are being closed-minded, patients going online and calling every doctor who advocates for more evidence a "murderer" is irresponsible too (all over facebook are MDs dubbed as killers). Serious career path reconsideration going on in my mind this week.

(Ill stop before this post is deleted too :p)
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Postby bluesky63 » Wed May 04, 2011 1:56 am

Oh no! Don't be cynical! When life gets you down, get silly.

Willowford, willowford, I suppose
your career you'll have to chose

Do slings and arrows kink your hose?
Shall you take arms and them oppose?

"Illegitimus non carborundum." :-)
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Postby 1eye » Wed May 04, 2011 5:59 am

It's something that doctors talk about among themselves but don't usually explain to patients because they don't want them to lose hope - well, most of them anyway).


Sorry for interrupting, but I think that is exactly what business a lot of doctors are in. The flow is all. There are always new sufferers coming in the door, so if some didn't lose hope and stop coming, they would soon be overwhelmed.

I was thinking about rehab last night. I think it's like high school. You are streamed. I was one of the rare lucky ones who graduated, but for most it is just a respite and training ground for them and the caregivers to prepare for a more permanent spot. The idea is to lose hope, perhaps gradually, but to lose it, for those that are in that 'stream'. Hope of going back to the way things were, because no one wants to be the one to disappoint. It's a very large group effort to let someone down gently, who may not even know that they don't have legs or a face anymore yet.

Unfortunately humanity is sometimes lost in the institutional formalized insured professional workplace of it all. They might make a mistake about which stream you are, or should be, in. Or change streams in mid horse, as it were.

I have no hope of going back to the way I was, I know. I also don't need an army of people continually reminding me. It wears me down, shakes my resolve.

The other thing you might want to know about rehab, before you go, is: don't fall. You can fall on the street, or in church, or anywhere, but the paperwork and bureaucracy at rehab, is so universally known-about around a fall, that it's like getting married, only instead of saying, "How's married life treatin' ya?", the lady at the cash in the tuck shop, who you might have seen twice before, and whose name you don't know, says "I heard you fell..." even if it was a foot and a half, and five seconds on your butt. Plus they have a plaque engraved in bronze with the date and circumstances. So don't fall. It isn't done.

Anyway, my small victory for today: I moved my toes last night. Sensing something was happening, I asked Suzanne to reach down and gently feel my first 3 toes. She cupped them in her hand, and I tried to move them. It was a rhythmic wiggle, sort of waving hello. She said, "Strong." I knew I was off to the races. "I haven't done *that* for years."

I can still do it.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby willowford » Wed May 04, 2011 6:02 am

bluesky63 wrote:Oh no! Don't be cynical! When life gets you down, get silly.

Willowford, willowford, I suppose
your career you'll have to chose

Do slings and arrows kink your hose?
Shall you take arms and them oppose?

"Illegitimus non carborundum." :-)


Haha. Nice! (Admittadly, I had to look up the latin!)
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Postby willowford » Wed May 04, 2011 6:04 am

1eye wrote:
It's something that doctors talk about among themselves but don't usually explain to patients because they don't want them to lose hope - well, most of them anyway).


Sorry for interrupting, but I think that is exactly what business a lot of doctors are in. The flow is all. There are always new sufferers coming in the door, so if some didn't lose hope and stop coming, they would soon be overwhelmed.

I was thinking about rehab last night. I think it's like high school. You are streamed. I was one of the rare lucky ones who graduated, but for most it is just a respite and training ground for them and the caregivers to prepare for a more permanent spot. The idea is to lose hope, perhaps gradually, but to lose it, for those that are in that 'stream'. Hope of going back to the way things were, because no one wants to be the one to disappoint. It's a very large group effort to let someone down gently, who may not even know that they don't have legs or a face anymore yet.

Unfortunately humanity is sometimes lost in the institutional formalized insured professional workplace of it all. They might make a mistake about which stream you are, or should be, in. Or change streams in mid horse, as it were.

I have no hope of going back to the way I was, I know. I also don't need an army of people continually reminding me. It wears me down, shakes my resolve.

The other thing you might want to know about rehab, before you go, is: don't fall. You can fall on the street, or in church, or anywhere, but the paperwork and bureaucracy at rehab, is so universally known-about around a fall, that it's like getting married, only instead of saying, "How's married life treatin' ya?", the lady at the cash in the tuck shop, who you might have seen twice before, and whose name you don't know, says "I heard you fell..." even if it was a foot and a half, and five seconds on your butt. Plus they have a plaque engraved in bronze with the date and circumstances. So don't fall. It isn't done.

Anyway, my small victory for today: I moved my toes last night. Sensing something was happening, I asked Suzanne to reach down and gently feel my first 3 toes. She cupped them in her hand, and I tried to move them. It was a rhythmic wiggle, sort of waving hello. She said, "Strong." I knew I was off to the races. "I haven't done *that* for years."

I can still do it.


It's too early for anyone to lose hope on this issue! Even if they have had the procedure and didn't see any results or had complications, there are increasing number of folks working on the technique - perfecting it - too early to say it didn't work, lose hope or "fall".
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Postby Cece » Wed May 04, 2011 6:51 am

Anyway, my small victory for today: I moved my toes last night.

Who says that's a small victory? I'd consider it big. Congrats, 1eye.

willowford, what is your chosen career path? By the time you get to it (assuming you still have years of training ahead of you), things will be different. Right now is a time a transition from a previous way of thinking to a new way of thinking. It is a dangerous time for patients as they make choices without everything fully known yet. It is a full-scale rebellion in many ways! In five years it will be very different. Between the "CCSVI is everything" and "CCSVI is nothing" arguments there is plenty of middle ground. CCSVI is something, that's what we know currently.

You are in the CCSVI subforum, that's why it always comes back to CCSVI, we are a little defensive of it too. It has been attacked at times. :)

But we are advocates for research here too. Have you noticed how very sloooow research can be? Even in CCSVI, which is in some ways moving at warp speed.
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Postby 1eye » Wed May 04, 2011 7:09 am

That's been the story of *my* life lately: (with apologies to Greg Brown) "Too soon to lose hope, too late to die young." ...ratz :wink:
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby willowford » Wed May 04, 2011 6:06 pm

Cece wrote:
Anyway, my small victory for today: I moved my toes last night.

Who says that's a small victory? I'd consider it big. Congrats, 1eye.

willowford, what is your chosen career path? By the time you get to it (assuming you still have years of training ahead of you), things will be different. Right now is a time a transition from a previous way of thinking to a new way of thinking. It is a dangerous time for patients as they make choices without everything fully known yet. It is a full-scale rebellion in many ways! In five years it will be very different. Between the "CCSVI is everything" and "CCSVI is nothing" arguments there is plenty of middle ground. CCSVI is something, that's what we know currently.

You are in the CCSVI subforum, that's why it always comes back to CCSVI, we are a little defensive of it too. It has been attacked at times. :)

But we are advocates for research here too. Have you noticed how very sloooow research can be? Even in CCSVI, which is in some ways moving at warp speed.


My career path is long and boring (like my posts). Won't bother you with details. But I always thought I would end up in MS research (as a clinician/scientist):

(1) I find MS (the disease) fascinating - in terms of complexity of it, multiple systems involved, lots still to be found, (2) I have always enjoyed random convos with patients about their lives, (3) tons of research opportunities (despite what some think, MS funding is ginormous).

You're right that many people are interested in evidence based medicine. But are some of these people interested only in research that just confirms what they already believe?

My (lengthy) hypothetical scenario in the link below. I just see this type of thing so often that it's making me re-think my career choices.

http://www.thisisms.com/ftopicp-163619.html#163619

(I hope it's not gonna be deleted!)
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