This Is MS Multiple Sclerosis Community: Knowledge & Support

I think this is a more than fair assessment of the ccsvi situation to date.

https://docs.google.com/open?id=0B3me8Y ... XzNYUmdBZw

quote "Chronic Cerebrospinal Venous Insufficiency as a Cause of Multiple Sclerosis: Controversy and Reality"

don't like the title. the community is no longer trying to say CCSVI is the cause of MS. i want to know what does CCSVI do to people who have MS or other health issues and what are the long term affects of trying to treat CCSVI. or worse - what are the long term affects of not treating it?

quote "R.J. Fox has received consulting fees from Avanir, Biogen Idec, EMD Serono, and Novartis, and research support, consultant and advisory committee fees from Biogen Idec were paid to Cleveland Clinic; A. Rae-Grant has received speaking honoraria from Biogen IDEC, Novartis, and Teva Neurosciences"

i always hate to read this stuff in any research. makes we wonder what the motivation for the paper is

to play the other side of the coin, Dr S and all his friends recently promoted CCSVI at the conference that CeCe posted about. they too have a financial interest. of course all their papers would be positive.

i think the only people who do not have a financial stake in this whole thing are the pwCCSVI who are posting videos all over the internet. IMO CCSVI is real. we just need to know more about it.


quote " ...Nonetheless, some clinicians are performing venoplasty based upon the following indications: patients must have the diagnosis of MS, must meet at least two criteria of CCSVI as assessed by ultrasound, and must have stenosis/flow ..."

i did not know there were clinics that required the person to have MS.

http://www.youtube.com/watch?v=NYA9ufivbDw

SOME PEOPLE SAY

Hi Doug, originally I didn't pay any attention to the title of that article but you're right and it seems they could have EASILY come up with something better or at least explained the reasoning for that title. I suppose it's important that we keep in mind that peer reviews written for other researchers who are less familiar with the current status of the theory of ccsvi than the people at thisisms. I don't find it hard to believe that of the Neurologists who have heard of ccsvi, most of them probably still associate ccsvi as the proposed cause of MS.

To expand on what you mentioned, 2 of the 4 writers of the article had nothing to disclose and the other two had pretty innocuous ties to pharmas. On the other hand, EVERY Interventional Radiologist involved with ccsvi finds it in their best financial interest to convince us that ccsvi is a legitimate ailment and venous angioplasty and various testing methods, all of which they profit from, are the required standard of care. For me it seems the best chance at getting some honesty would come from the group in which 50% of the group doesn't stand to gain financially.

What raised media attention and then public interest in ccsvi was Zamboni's claim of absolute specificity between ccsvi and MS and with that in mind early on the question would have been why would you set an unbroken leg and in kind why would someone treat ccsvi in someone who didn't have MS/ccsvi?

Now that absolute ccsvi specificity to MS has succeeded in giving the theory of ccsvi believability in the minds of some, it evidently now is time to point out that ccsvi is also associated with a host of other (profitable) diseases and hopefully no one will be the wiser and realize that an association with a host of other diseases pretty much nixes the specific relationship between ccsvi and MS which was originally the only interesting thing about the theory of ccsvi.

Let's not forget all the people (almost 25% of the healthy controls in the UofB early study results for example) who meet the criteria for CCSVI on ultrasound but do not have MS or any neurological or pathological sequelae whatsoever.

Clearly CCSVI can exist in the absence of any symptoms relating to it...so how can anyone say it contributes to symptoms in those with MS??

A MS patient can have brain lesions shown on a MRI yet not exhibit any symptoms. Or they could have a lot of symptoms. I would imagine that a MS patient can have CCSVI exist as well and be in the same boat.

Yes, an MSer can have lesions that don't correlate to symptoms. But healthy people don't typically have lesions. That's why MRI is used as a diagnostic tool otherwise the lesioning used to diagnose MS would not be diagnostic if it occurred in healthy people. On the other hand, healthy people, at about a quarter of them if not more (based on doppler), have CCSVI. It may not be related to poor health at all, even in those with MS. After all, a lot of people with MS (according to the UofB study) do not have CCSVI. But they certainly have MS.

But healthy people can have lesions as demonstrated by healthy controls done for clinical trials and it is known that lesions can come and go. That is why a MS diagnosis is not given by MRI alone.

As for CCSVI's connection with MS....still a lot of research to be done in that area but nobody can be absolutely certain one way or the other in the theory at this point in time.

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

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.



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.

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

Jimmy and NHE--
????
Don't we have a discussion/debate/negative view thread going on the CCSVI forum?

Dr. Fox was at ISNVD, and had some good conversations with the other doctors. This is an earlier paper, his team's research in ongoing.

And just as FYI--this study was not started by Dr. Fox. It was initiated by Claudiu Diaconu as part of his Case Western student study on CCSVI. Claudiu Diaconu first presented his research proposal to study CCSVI in November 2010 at the Lepow Day at Case Western. This is a yearly event, where medical students present their research projects. Diaconu's was called: An Assessment of Chronic Cerebrospinal Venous Insufficiency -Tissue Analysis of the Cerebrospinal Veins. His study was later funded with a grant from the NMSS, and Dr. Fox came on board. In his proposal, Diaconu set out how he would harvest the autopsied veins and inject them with a silicone gel in the lab, so that the interior of the vein could be studied. This was one part of his study, which also included doppler ultrasound and MRV assessment of CCSVI. He spoke at ECTRIMS, showed what he found in MS veins, and created quite a stir.
http://ms.about.com/b/2011/10/25/a-ccsv ... ink-so.htm

We have almost 200 papers on CCSVI research at the new, searchable CCSVI Alliance database--this has been thru the labor of many volunteers (a few from this forum) Check it out-
http://www.ccsvi.org/index.php/componen ... ask=search


cheer

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

If a person was completely asymptomatic, I doubt he or she would be diagnosed with MS.

Cheer, I still can't believe that you (or anyone else) thinks that every single discussion/thread/post/ opinion that is either negative or even NEUTRAL about CCSVI should be banished from anywhere on the forum and cast into that one conglomerate thread in the midst of CCSVI Land where all specific trains of discussion are ultimately lost by mixing them all together. It's unfair no matter what one's opinion on CCSVI.

Holy crap.

_________________
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

Please Cheer there seems to be a civil discussion going on here about the current status of CCSVI research. I can not speak for everyone but I decided that in order to keep TIMS a reputable forum I would not engage in frivolous banter on the CCSVI forum. I ask that you do the same on the general forum. 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

Thanks for your input Joan but I intentionally didn't post this neutral article in the ccsvi forum because didn't want to deal with the hysterics. I had hoped you wouldn't bring it here...

Not that you'd lie to protect the "honor" of ccsvi but please notice the "2012 Feb 5. [Epub ahead of print]" http://www.ncbi.nlm.nih.gov/pubmed/22311713 Earlier than what? It's not even been printed yet?

A couple of weeks ago in a thread the moderators ended up deleting....again in the General Forum, you told someone in that thread that if they didn't believe in ccsvi they should stay out of the ccsvi forum because there are a multitude of others available at thisisms. Now you are saying that people who don't believe in ccsvi should post in the ccsvi forums?

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.