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Did Colin Rose give marching orders to send all the skeptics out today or what?



You can tell by the majority of the skeptics posting in a few threads, something is up - and that the "science" that goes into these "studies" is junk.


I'm a Six Sigma BlackBelt at work, and I'll tell you you can skew statistics and design studies to show what you want to show ... it's really quite easy.

It's funny a lot of respected doctors find CCSVI - I wish all the CCSVI doctors would come out of hiding and discuss freely - not just the ones we know about.

It's funny all these doctors so blatantly anti-CCSVI continue to put out these studies that show just what you'd expect they'd show ... and so quickly too ... while even the MSS sponsored studies are at least 2 years.


Dear skeptics ... get it through your heads. Doppler AND/OR MRV do not treat CCSVI and are only a small INSIGHT into what actually goes on in the veins.

Your BELOVED study prior where they did venograms (Beirut) ... SHOWED a strong association between MS and CCSVI! (was this done by the same doctor?) ...

again

scorpion wrote:

DrCumming wrote:What really surprises me is the the title of the article. Like they are gloating that they have debunked the theory of CCSVI. Weird. Very unprofessional.
Amazing the editors allowed it.

At this point, the only thing that matters is the outcomes of the various trials underway. These reports about MR or US not finding CCSVI do not answer the question if jugular venoplasty improves quality of life and prevents or slows disease progression in pwMS.

You feel the same way about articles that claim CCSVI cures MS?

There hasn't been a paper published that claims CCSVI is a cure has there? You know the difference between a tabloid article written by a hack and a scientific paper written by doctors right?

Anyway, I have no real opinion on the paper itself, beyond the findings being completely at odds with my own personal experience. My stenosis on one side, and malfunctioning valve on the other, were lower than C6, so this would not have been seen, yet they were testing reflux after apnea. I would have to be a sonographer to have an opinion on their technique but, as it is, all I can say is that I know that they are wrong. I saw that there was barely any flow at all in my left jugular with my own eyes, the colour doppler barely showed a colour shift at all, it was black. The radiologist moved from the left to the right and back again to show the difference. The probe was similarly close to my neck on both sides, he held it at the same angle. He moved the ultrasound machine so I could see the display, I could see the vein being found, he wasn't adjusting the machine at all. If it was a deception then it was an extremely intricate one. I don't think for a second that it was of, but if I imagine that it may have been, I can't actually see how it might have been achieved.

It certainly is an odd impasse though. People who have had the treatment, felt improvement and know it to be true and sceptics disbelieving, with no direct experience, and, on top of this, papers being published that further cloud the issue.

And meanwhile neurologists, believing that they are acting in the best interests of the patients are, convincingly I'm sure, turning people off the idea of seeking this treatment. It really is a terrible shame, given how quickly some people deteriorate.

Really, since my procedure, and I hate to repeat myself but it is important to state, I have felt dramatic improvements. And I am neither an optimist nor a fanatic. I was quite prepared to experience no change in my condition. Bear in mind that I am pretty thoroughly f****ed up, and in a state where noone involved with my treatment is expecting even the slightest recovery. But I am in much less of a bad situation than I was six weeks ago. I really cannot believe this to be the placebo effect. Over the years I have been so excited, convinced, by the promise of nicotinamide, bowman birk complex, the best bet diet, tryptophan. Old ladies would ask if I needed help as a clung to the wall, spazzing down the street and I'd say 'no I'm fine' and go on to explain how my supplements would cure me. But I got no relief from them whatsoever, nor Tizanadine, nor Baclofen, even when my disease was in the inflammatory stage. Despite my fanatical belief in these supplements, the diet, and great hope for the drugs, I quickly ended up in a wheelchair. And now I get a treatment when my disease is more progressive and has progressed a great deal. I have no expectations. Yet I improve a great deal.

Just at the risk of going on, I'm a realist. MS has absolutely tired me out and I didn't entertain thoughts of getting much better. In fact I was almost ready to give up completely. But I did get quite significantly better. Real improvements, quantifiable improvements. I can't emphasise this more, physical improvements that are measurable and obvious. How am I to explain that? Well, quite simply that the stenosis I saw with my own eyes resulted, in its treatment, in the amelioration of my symptoms.

L,

Thank you for that. I am so happy that you have benefitted from the treatment and I hope you see more improvements.

When we discussed the possibility of treatment our good doctor made it clear that there was no way of knowing the outcome but he made a point which hit home and that was "If you stay the same then we have achieved something."

Drury

Maybe I've misinterpreted, but I think most of the people on TiMS do not feel 'healthy' and have not as much interest in CCSVI in healthy people. I sure don't. All these angels on pinheads people are discussing make little difference to most of the people I know who have had the Procedure. I know, don't read it, the old argument you hear trotted out whenever censorship threatens. I do follow things Cheerleader says, but I guess that is not enough to make the time worthwhile.

It is sometimes fun to watch the squabbles, but much as I dislike ad hominem logic, it seems the name of the speaker says a lot more than any substance you might find by scraping *this* barrel. Too bad people have to pigeon-hole themselves this way. Whenever I see the name 'scorpion', I am never surprised to see the name Zamboni following it.

You would think other targets would be just as attractive. There are plenty to choose from these days.

Moving the goalposts, also known as raising the bar, is an informal logically fallacious argument in which evidence presented in response to a specific claim is dismissed and some other (often greater) evidence is demanded. In other words, after an attempt has been made to score a goal, the goalposts are moved to exclude the attempt. This attempts to leave the impression that an argument had a fair hearing while actually reaching a preordained conclusion.

DrCumming wrote:At this point, the only thing that matters is the outcomes of the various trials underway. These reports about MR or US not finding CCSVI do not answer the question if jugular venoplasty improves quality of life and prevents or slows disease progression in pwMS.

This is a good reminder of what's important. We've had many imaging studies, we have just the one endovascular treatment study by Dr. Zamboni.

Georgetown had been treating in a trial but discontinued due to lack of results and a need to change the azygous protocol. It was rumored that there was a paper by the lead investigator coming out in December, but that didn't happen. Anyway I don't expect much from that one, if it comes. We have at least one patient here too who had nothing found in Georgetown but then went to Dr. Haskal who found ccsvi and treated her, with good results.

BNAC did its 10 person safety trial but then stalled on the follow-up 20 person RCT, due to lack of funding.

concerned wrote:If 1 in 4 healthy controls have CCSVI, what do they need to be cured of?

The above data are from the preliminary results of just one study, BNAC, out of several studies currently underway and were based on MRV which one of the study's principle investigators, Dr. Zivadinov, has stated is not a useful analytical technique for CCSVI.

In the preliminary results from Kuwait, only 7% of 100 healthy controls had impaired venous flow via Doppler analysis. In contrast, 87% of 100 MS patients were positive.

http://www.ccsvikuwait.com/Details.aspx?d=4

Control group N=100 patient without MS

Kuwaiti: non Kuwaiti % ···· 48:52
Male: female % ············ 25:75
Age min-max ··············· 23-57
mean ±SD ·················· 39.7±7.8
Positive Duplex ··········· 7%
Normal Duplex ············· 93%


Study group N=100 patient with MS

Started colour Doppler screening of neck veins as protocol of Prof. Zamboni

Kuwaiti: non Kuwaiti % ···· 100
Male: female % ············ 48:52
Age min-max ··············· 22-57
Positive Duplex ··········· 87%
Positive MRV ·············· 96%

NHE

Was the study from Kuwait blinded at all?

Those BNAC numbers are from a blinded study of 500 people with CTEVDE (Combined Transcranial and Extracranial Venous Doppler Evaluation) not with MRV.

http://www.bnac.net/wp-content/uploads/ ... _ccsvi.pdf


ALSO: Zivadinov seemed to agree with wheelchair kamikaze's analysis of the BNAC data, which is in line with the numbers you questioned (for the wrong reason).

Indeed, initial studies have shown that up to 25% of healthy people appear to have the vascular blockages known as CCSVI, to no apparent ill effect (click here for info). Venous anatomy is redundant and adaptable, and it had been thought that blockages in veins are largely compensated for by this adaptability. Blood flow blocked in one vessel was assumed to be simply routed through another, or through new vessels grown by the body to make up for the blockage, called collaterals. Perhaps one fringe benefit of the investigation into CCSVI will be closer attention paid to venous anatomy on the whole.

http://www.wheelchairkamikaze.com/2010/ ... -info.html

So many wands, so much conflicting evidence. Hmm. Seems that imaging studies have a prediliction towards inconclusive and conflicting results.

I know, how about we do a double blinded placebo controlled treatment trial, utilizing something a bit more profound say, venography, and see where that leads us, or are these endless streams of neuros doing imaging studies more in line with a politically motivated anti-Zamboni bent?

All this imaging study stuff run by neuros is not even remotely intriguing, unless one of course is looking to beat another dead horse a couple times.

So getcha digs in while the diggins good is all I can say. Blog away..

concerned wrote: ALSO: Zivadinov seemed to agree with wheelchair kamikaze's analysis of the BNAC data, which is in line with the numbers you questioned (for the wrong reason).

Huh, for a minute there ... I thought we weren't supposed to trust blog reports ... by "expert" internet bloggers (I mean wannabe doctors) regarding CCSVI.

I don't see how you were talking about anybody but Marc.

Note that Dr. Zivadinov is not a blogger.

Also, I don't think that Marc is a wannabe doctor, and I quite enjoy reading his blog posts on a variety of topics. It's fairly rude to talk about another poster here that way.


ALSO- I've never pretended to have any answers about CCSVI, just that things aren't as certain as some posters here insist they are. ("CCSVI is real")

concerned wrote:

concerned wrote: ALSO: Zivadinov seemed to agree with wheelchair kamikaze's analysis of the BNAC data, which is in line with the numbers you questioned (for the wrong reason).

Note that Dr. Zivadinov is not a blogger.

Also, I don't think that Marc is a wannabe doctor, and I quite enjoy reading his blog posts on a variety of topics. It's fairly rude to talk about another poster here that way.


now edited to say:

I don't see how you were talking about anybody but Marc.

Note that Dr. Zivadinov is not a blogger.

Also, I don't think that Marc is a wannabe doctor, and I quite enjoy reading his blog posts on a variety of topics. It's fairly rude to talk about another poster here that way.


ALSO- I've never pretended to have any answers about CCSVI, just that things aren't as certain as some posters here insist they are. ("CCSVI is real")

Wasn't a shot at marc ... was more a reference to anyone posting on an internet board or blog ... or facebook ...

got your attention though ...

I'll edit my previous post to make that more clear for you ...

Oh ... and if Dr. Zivadinov isn't a blogger, fine. But then please note where he said MRV is a basically worthless diagnostic tool ... so please stop pointing to studies trying to use MRV as a diagnostic tool ... since he's an "expert" as you imply.

I'm pretty sure he'll say the same thing about doppler soon ... other doctors have already.

Venography ... and your Beirut study ... they pretty much proved the association between MS and CCSVI - errrrr ... that doesn't exist.

I don't claim to have ANY answers ... ... that's news to me. Shall I start going back through old posts and re-posting quotes? I've got time ...

Since this question might be lost by all the rude, sarcastic responses my perfectly legitimate comments received, I will pose this again to NHE.

NHE wrote:

concerned wrote:If 1 in 4 healthy controls have CCSVI, what do they need to be cured of?

The above data are from the preliminary results of just one study, BNAC, out of several studies currently underway and were based on MRV which one of the study's principle investigators, Dr. Zivadinov, has stated is not a useful analytical technique for CCSVI.

In the preliminary results from Kuwait, only 7% of 100 healthy controls had impaired venous flow via Doppler analysis. In contrast, 87% of 100 MS patients were positive.

http://www.ccsvikuwait.com/Details.aspx?d=4

Control group N=100 patient without MS

Kuwaiti: non Kuwaiti % ···· 48:52
Male: female % ············ 25:75
Age min-max ··············· 23-57
mean ±SD ·················· 39.7±7.8
Positive Duplex ··········· 7%
Normal Duplex ············· 93%


Study group N=100 patient with MS

Started colour Doppler screening of neck veins as protocol of Prof. Zamboni

Kuwaiti: non Kuwaiti % ···· 100
Male: female % ············ 48:52
Age min-max ··············· 22-57
Positive Duplex ··········· 87%
Positive MRV ·············· 96%

NHE

concerned wrote:Was the study from Kuwait blinded at all?

Those BNAC numbers are from a blinded study of 500 people with CTEVDE (Combined Transcranial and Extracranial Venous Doppler Evaluation) not with MRV.

http://www.bnac.net/wp-content/uploads/ ... _ccsvi.pdf


ALSO: Zivadinov seemed to agree with wheelchair kamikaze's analysis of the BNAC data, which is in line with the numbers you questioned (for the wrong reason).

CCSVIhusband wrote:Please note, I haven't responded to any of these in over 2 months-ish now

I only send them when you try to "engage" me on the board, which you've stated is your own personal crusade many times.

You didn't try to engage me on the board, so I didn't send any.

You started trying to "engage" me on the board again, so I started responding in PM's again.

I'll open up all my PM's for anyone to see if you don't believe me. Just say the word and I'll give everyone my password, after I delete any PM's from anyone who wouldn't want theirs made public.

I have absolutely nothing to hide.


ALSO- you may not have made a new post once but you have responded in edits, obviously/

concerned wrote:

CCSVIhusband wrote:Please note, I haven't responded to any of these in over 2 months-ish now

I only send them when you try to "engage" me on the board, which you've stated is your own personal crusade many times.

You didn't try to engage me on the board, so I didn't send any.

You started trying to "engage" me on the board again, so I started responding in PM's again.

I'll open up all my PM's for anyone to see if you don't believe me. Just say the word and I'll give everyone my password, after I delete any PM's from anyone who wouldn't want theirs made public.

I have absolutely nothing to hide.


ALSO- you may not have made a new post once but you have responded in edits, obviously/

yawn.

As we've all seen, I didn't respond to him in a personal way, I responded to the hypocrisy of the post ... if that's engaging him in any way, I don't understand what "engaging" someone in is.

I thought it was getting debate. So he wants no debate, just his posts to go unquestioned.

Is that right?

So now, I'm told, where I can, and can't post in a forum ... by a poster, because he doesn't like the story I have to tell re CCSVI ...

A skeptic who doesn't like my personal experience and knowledge of CCSVI because it doesn't fall in line with their line of thinking that CCSVI is junk science ... huh. How about that? I would have guessed they'd love what I say positive about CCSVI ...

Come on ... this guy needs to be banned from this forum ... no ifs ands or buts about it.

I haven't tried to engage him and cause trouble in months now ... he admitted it above. But now I can't even respond to a thread I have knowledge about? GET REAL ...

hypocrisy ... do as I say, not as I do ...

and I continue to be harassed nightly by PM just for posting thoughts on a forum. Not calling names. Not attacking. Posting truth, and presenting a diverging opinion.