Matter of fact overview of ccsvi

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Re: Matter of fact overview of ccsvi

Postby HarryZ » Sun Feb 26, 2012 7:37 pm

But healthy people don't take part as controls in MS clinical trials, MSer's receiving a placebo do.


But healthy volunteers have had MRI scans done so they can research what they find and that's when they have seen lesions.

Yes, there are other causes of demyelination besides MS, but no, lesions are not found in healthy people. There is always a pathology associated with them. Just because a specific lesion doesn't correlate to a specific symptom doesn't mean that lesioning isn't associated with neurological symptoms - it is.


I believe you are wrong on that point. Lesions are seen on MRI scans in healthy people. A number of years ago I read information on that and was also told the same info by a person who does MS research. And they also discovered that lesions do come and go on their own and they are not sure just why.

Unlike MS, there is no defined symptomology that has been associated with
CCSVI. This is supported by the findings that: a high percentage of PwMS do not have CCSVI on doppler, a fair # of healthy people without illness may have CCSVI, and many PwMS do not report any change in their health following treatment and alleviation of CCSVI.


Other than many MS patients who have CCSVI have several levels of symptoms!

There are MS patients who don't have visible lesions but have symptoms. (My wife was one of them) Of course there are people who have CCSVI and are healthy. There are people who have lesions and appear healthy even though they have been diagnosed with MS. And there are MS patients who do not have any change in their health after they receive one of the approved drugs.

It's impossible to try and state what does or doesn't affect MS. Without a known cause it's all theory and speculation. What some researchers say may be the answer other researchers say is all wrong and vice versa.

It is enough to make one wonder whether CCSVI is disease-causing at all or simply a benign anomaly/variation.


But what can be said is that until a lot more research is done with CCSVI, one can't make any kind of definitive statement one way or the other.
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Re: Matter of fact overview of ccsvi

Postby Lyon » Sun Feb 26, 2012 8:56 pm

HarryZ wrote: I believe you are wrong on that point. Lesions are seen on MRI scans in healthy people. A number of years ago I read information on that and was also told the same info by a person who does MS research. And they also discovered that lesions do come and go on their own and they are not sure just why.
I kind of know what you're talking about Harry but I don't think you have it absolutely right. In the early days MRI was hideously expensive and it's still expensive enough that they don't do MRI's for the heck of it. I would find it interesting to know who and when anyone did a sizable study using MRI on "normals" because I've always thought that a good idea and I've never seen evidence of anyone doing it.

What has happened is that over the years people not diagnosed with MS in life were found to have characteristic lesions upon autopsy and when you consider how few autopsies are done per capita there might be a sizable amount of people who die without ever having been officially diagnosed with MS.

HarryZ wrote:And they also discovered that lesions do come and go on their own and they are not sure just why.
SOME lesions come and go on their own. That is true of people with MS.

HarryZ wrote:Of course there are people who have CCSVI and are healthy.
Of course there are! By the way, has someone proven that there is such a thing as a cerebrospinal venous insufficiency that the rest of the world isn't aware of yet??
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Re: Matter of fact overview of ccsvi

Postby HarryZ » Sun Feb 26, 2012 10:36 pm

I kind of know what you're talking about Harry but I don't think you have it absolutely right. In the early days MRI was hideously expensive and it's still expensive enough that they don't do MRI's for the heck of it. I would find it interesting to know who and when anyone did a sizable study using MRI on "normals" because I've always thought that a good idea and I've never seen evidence of anyone doing it.


From what I was told, they did these MRI's on healthy university students because they wanted to compare them to MRI's from people who had diseases such as MS. I will have to contact someone who perhaps may be able to point me to the study. It kind of makes sense to do that, especially in the early days of the MRI.

What has happened is that over the years people not diagnosed with MS in life were found to have characteristic lesions upon autopsy and when you consider how few autopsies are done per capita there might be a sizable amount of people who die without ever having been officially diagnosed with MS.


I'm not sure one could be diagnosed with MS from an autopsy due to lesions. Never heard of that before but I guess anything is possible.

SOME lesions come and go on their own. That is true of people with MS.


And of others who don't have MS.


Of course there are! By the way, has someone proven that there is such a thing as a cerebrospinal venous insufficiency that the rest of the world isn't aware of yet??


You just never know :wink:
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Re: Matter of fact overview of ccsvi

Postby Lyon » Mon Feb 27, 2012 3:58 am

HarryZ wrote: From what I was told, they did these MRI's on healthy university students because they wanted to compare them to MRI's from people who had diseases such as MS. I will have to contact someone who perhaps may be able to point me to the study. It kind of makes sense to do that, especially in the early days of the MRI.

This is your usual way of saving face when we both know you're you're wrong so in this same place at the same time a week from now I'll ask you for the link to that study Harry :wink:
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Re: Matter of fact overview of ccsvi

Postby DougL » Mon Feb 27, 2012 5:33 am

Lyon wrote:Not to belabor the point Doug but I just noticed that when you type "ccsvi" into the Facebook search box at the top, the first link is cheer's ccsvi Facebook which says "cause" as does the actual facebook page and by all accounts cheerleader is not only a member of the ccsvi community but has always been the driving force behind it.


sorry i don't follow the FB sites very often. i did not know that.
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Re: Matter of fact overview of ccsvi

Postby Lyon » Mon Feb 27, 2012 5:58 am

DougL wrote: sorry i don't follow the FB sites very often. i did not know that.

Nothing to be sorry about, I didn't know it either until I noticed it when looking for something else.
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Re: Matter of fact overview of ccsvi

Postby HarryZ » Mon Feb 27, 2012 7:59 am

This is your usual way of saving face when we both know you're you're wrong so in this same place at the same time a week from now I'll ask you for the link to that study Harry :wink:


It appears you are saying that I am deliberately misleading the readers here, Bob. I do take exception to that but as usual, this is how you reply quite often, not only to me but to others that you disagree with on this board. You seem to think that I make these stories up but nothing can be further from the truth. I have already e-mailed the person who told me about this a number of years ago and asked if I could be sent the appropriate information.

I've been around long enough and read enough of your similar comments in the past to assign the level of importance that your post deserves. You can figure that out in your spare time.
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Re: Matter of fact overview of ccsvi

Postby Lyon » Mon Feb 27, 2012 9:05 am

HarryZ wrote: I've been around long enough and read enough of your similar comments in the past to assign the level of importance that your post deserves. You can figure that out in your spare time.

Coming from someone I consider a personal friend, that hurts my feelings. I wasn't calling you a liar, I was only saying that when you're wrong you have a habit of saying that you'll get back to me with the information later and I never hear of it again and I'm sorry if this time was going to be different.

I personally would like nothing more than for you to supply the supporting evidence. As I mentioned, I've always thought it a good idea to MRI healthy controls but I've actually done searches and could never come up with anything.

As a wise man said not long ago....
HaroldZ wrote:In the words of Bertand Russell....the fact that an opinion has been widely held is no evidence whatsoever that it is not utterly absurd: indeed, in view of the silliness of the majority of mankind, a widespread belief is more likely to be foolish than sensible.
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Re: Matter of fact overview of ccsvi

Postby cheerleader » Mon Feb 27, 2012 9:47 am

fact check:
1. I do not call CCSVI the cause of MS on the Facebook page. That is part of the title of Marie Rhodes' book (titled by her publisher) called CCSVI as the Cause of MS: The Science Behind the Controversial Theory. Marie and I co-administer the CCSVI in Multiple Sclerosis Facebook page.
And the Italian CCSVI FB page has 10,000 more members than ours. We're not #1.

There were over 300 physicians, researchers, imaging professionals, neurologists, IRs and patients in Orlando last week. I wasn't there, we went to our son's All State concert. The science does not need me. That's high praise from Bob, but it's simply not true. I'm not any driving force. It's the doctors and researchers from around the globe.
CCSVI exists---as stated by the researchers in Florida. See the abstracts presented:
http://www.isnvd.org/files/ISNVD%20Abstract%20Book.pdf

2. Harry's right.
Although these improve MS specificity, MRI is not a pathologically definitive investigation; also up to 4% of normal healthy controls have periventricular lesions indistinguishable from MS and caution must be exercised in using MRI alone to diagnose MS.

http://jnnp.bmj.com/content/71/suppl_2/ii3.full

White matter lesions are also found in healthy elderly controls:
http://wixtedlab.ucsd.edu/publications/ ... cook02.pdf
In this study, the healthy control group for a migraine study showed hyperintensities:
http://www.ncbi.nlm.nih.gov/pubmed/17116221

So, now that this wonderful discussion has, once again, denegrated into Bob hurling accusations (that have nothing to do with his original post)--can it pleased be moved to the CCSVI forum, where other such posts belong?
cheer
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Matter of fact overview of ccsvi

Postby Lyon » Mon Feb 27, 2012 11:10 am

cheerleader wrote:fact check:
I do not call CCSVI the cause of MS. That is part of the title of Marie Rhodes' book (titled by her publisher) called CCSVI as the Cause of MS: The Science Behind the Controversial Theory.
I know the title of Marie's book. The question is, why is the Facebook page's title (copied and pasted from Facebook)
Facebook page title wrote:CCSVI in Multiple Sclerosis Cause.


cheerleader wrote: Harry's right.
Sadly things aren't as simple as you proclaiming them so. Harry is not right. Harry is misguided.
Lyon wrote:What has happened is that over the years people not diagnosed with MS in life were found to have characteristic lesions upon autopsy and when you consider how few autopsies are done per capita there might be a sizable amount of people who die without ever having been officially diagnosed with MS.
Harry read the above quote and evidently assumed that I was inferring that everyone with a lesion at autopsy had MS. Need I point out the word "might" and its definition?



cheerleader wrote:White matter lesions are also found in healthy elderly controls:
http://wixtedlab.ucsd.edu/publications/ ... cook02.pdf
In this study, the healthy control group for a migraine study showed hyperintensities:
http://www.ncbi.nlm.nih.gov/pubmed/17116221
Thanks for the substantial use of the word "healthy" for subliminal purposes but need I point out that a study of elderly people isn't representative of a normal population nor are those afflicted with migraines. The difference from "normal" is the very reason for those studies. Seriously, if everyone had lesions what would be the purpose of spending all that time and money on studies showing that elderly people and people with migraines have lesions?

Take a deep breath. REALLY, it's not THAT important to prove me wrong.



cheerleader wrote:So, now that this wonderful discussion has, once again, denegrated into Bob hurling accusations--can it pleased be moved to the CCSVI forum, where other such posts belong?
I recommend that everyone read through this entire thread to see that things were fine until cheerleader got here and became a disruptive influence.

This is the second time that you've pleaded to have the moderators cast this conversation into that skeptic septic tank thread in the ccsvi forum. WHY IS IT ALWAYS SO IMPORTANT TO YOU THAT EVERYONE ONLY GET TO SEE WHAT YOU WANT THEM TO SEE?
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Re: Matter of fact overview of ccsvi

Postby cheerleader » Mon Feb 27, 2012 12:49 pm

It's a "cause" page. That doesn't mean I think CCSVI is causative, Bob. It's a Facebook page category. The name of the page is CCSVI in Multiple Sclerosis, and our group community's cause is learning more about CCSVI.
https://www.facebook.com/note.php?note_id=43952236636
:roll:

4% of normal, healthy, living people have white matter lesions that look like MS on MRI
Although these improve MS specificity, MRI is not a pathologically definitive investigation; also up to 4% of normal healthy controls have periventricular lesions indistinguishable from MS and caution must be exercised in using MRI alone to diagnose MS.

http://jnnp.bmj.com/content/71/suppl_2/ii3.full

I could care less about being right or wrong. I'm just sick of you bullying me and Harry and a host of others online.
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http://ccsviinms.blogspot.com
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Re: Matter of fact overview of ccsvi

Postby scorpions » Mon Feb 27, 2012 1:02 pm

cheerleader wrote:It's a "cause" page. That doesn't mean I think CCSVI is causative, Bob. It's a Facebook page category. The name of the page is CCSVI in Multiple Sclerosis, and our group community's cause is learning more about CCSVI.
https://www.facebook.com/note.php?note_id=43952236636
:roll:

4% of normal, healthy, living people have white matter lesions that look like MS on MRI
Although these improve MS specificity, MRI is not a pathologically definitive investigation; also up to 4% of normal healthy controls have periventricular lesions indistinguishable from MS and caution must be exercised in using MRI alone to diagnose MS.

http://jnnp.bmj.com/content/71/suppl_2/ii3.full

I could care less about being right or wrong. I'm just sick of you bullying me and Harry and a host of others online.
cheer


I have felt that the us against them mentality that seemed to permeate any discussion surrounding CCSVI had become a thing of the past. Let us keep it this way. Thanks. Scorp
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Re: Matter of fact overview of ccsvi

Postby Lyon » Mon Feb 27, 2012 1:37 pm

cheerleader wrote: I could care less about being right or wrong. I'm just sick of you bullying me and Harry and a host of others online.
Bully you? Remember this is the general forum and that you recently made it clear that anyone with objective thoughts are more than welcome to stay away from the ccsvi forum.
cheerleader wrote:If people are not interested in CCSVI, they can go to the other forums.
I guess the people reading all this need to decide for themselves how much bullying has gone on and if your "bringing it" here to the general forum constitutes bullying on my part. Seems to me that you're the one who is chasing people down who don't tow the line that you want them to.
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Re: Matter of fact overview of ccsvi

Postby HarryZ » Mon Feb 27, 2012 6:03 pm

Coming from someone I consider a personal friend, that hurts my feelings. I wasn't calling you a liar, I was only saying that when you're wrong you have a habit of saying that you'll get back to me with the information later and I never hear of it again and I'm sorry if this time was going to be different.


Bob,

I'm really not sure how you can possibly equate saying that I will get back to on something to me being wrong!!! Good grief, in the past I have made every to get back to you and anyone else when they have asked me to provide them with proof of my comments. I suppose over the years here I have missed doing this a couple of times but it certainly wasn't intentional on certainly not because I was wrong. I do make statements and opinions that I have heard over the years and I never make up information to try and disguise the truth. If you wanted examples of the information I spoke about, why couldn't you just have asked for the info without trying to equate it to me being wrong and saying this is what I often did to try and cover up something?

I'm glad your intent was not to call me a liar but that is honestly how I felt and I had similar feelings from your perceived inference.

I personally would like nothing more than for you to supply the supporting evidence. As I mentioned, I've always thought it a good idea to MRI healthy controls but I've actually done searches and could never come up with anything.


Here are a few links to MRI's done on relatively healthy subjects. My contact could not find the specific MRI study on univesity students that I had read about several year ago.

http://jama.ama-assn.org/content/282/1/36.full.pdf
http://www.nmr.mgh.harvard.edu/~bradd/d ... p_2001.pdf
http://imaging.jhu.edu/volunteer-for-a- ... volunteers
http://www.sickkids.ca/Research/mskids/ ... teers.html
http://stroke.ahajournals.org/content/35/9/2171.full

As a wise man said not long ago....
HaroldZ wrote:In the words of Bertand Russell....the fact that an opinion has been widely held is no evidence whatsoever that it is not utterly absurd: indeed, in view of the silliness of the majority of mankind, a widespread belief is more likely to be foolish than sensible.


Good ole Bertrand Russell....this quote was taken from the Pathogenesis of MS by Dr. P.O. Behan. He was referring to the hypothesis held by most MS neuros that MS was an auto-immune disease. Quite appropriate but that topic can be saved for another day.

So Bob, now that we have expressed our feelings over each others comments, I believe it's time to move on. And I would hope that in the future, if you want me to provide info on what I may say, please ask for it without adding the extra words that could be misinterpreted. Thanks.

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Re: Matter of fact overview of ccsvi

Postby Lyon » Mon Feb 27, 2012 7:01 pm

HarryZ wrote: So Bob, now that we have expressed our feelings over each others comments, I believe it's time to move on. And I would hope that in the future, if you want me to provide info on what I may say, please ask for it without adding the extra words that could be misinterpreted.
See, I was right when I said you were a wise man.

Still, if you find the particular links you were talking regarding a good sized MRI study of normals I'd like to see them because that has been a long time desire of mine. After all, although it would be an expensive study, how can the differences between an ill person and a healthy one be stated with confidence if researchers don't know with certainty the perimeters of "healthy"?

In the same "vein" it's obvious in this ccsvi situation that researchers can't convincingly state what the perimeters of a healthy venous system are because no one has ever found reason to study healthy people and that is showing to be to our detriment.
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