This Is MS Multiple Sclerosis Community: Knowledge & Support

Geeze guys give it a rest. There is no conspiracy. CCSVI is going through clinical trials as we speak. Zamboni himself has said that the liberation procedure may be one more weapon in the fight against MS, NOT a cure. All of us with MS, the MS Society, neuros, etc. etc. etc. hope that the liberation procedure helps people with their symptoms. Trust me, we all do. If someone questions CCSVI it does not mean they do not want it to fail. It may be they just question the science behind it. Zamboni is no different than any other scientist testing his hypothesis. The "establishment against Zamboni" is simply something that bloggers who are angry at the world created. Enough already.

I dont know the world in which you live ...

Is it not a fact that MS societies tried to ignore CCSVI?
Is it not a fact that patients are trying to fund the research?
Is it not a fact that Freedman called CCSVI a hoax?
Is it not a fact that Neuros from Germany called Zamboni's findings as valueless?
Is it not a fact that Khan compared Zamboni's work with bee sting therapy?
Is it not a fact that the same team that termed Zamboni's work valueless have now come up with a paper that concludes that CCSVI and MS are not linked?

Wake up!

Scorpion, please take your blinders off.

Have you not noticed all the incorrect information (which conveniently damages the CCSVI case) that is being imparted by the MSS at information sessions, via mail outs (see Brightspot's post) and the neuros on their panels or in various media interviews?

If those parties are indeed excited about CCSVI and hopeful that it will be an answer for MS patients...and so happy that they were "the first out the door" to launch their competition for grant funding...then why all the duplicity? Why are they not presenting correct information all-around?

A link for their April 7th webcast is online now. I watched it yesterday and noticed that they edited out the part where I corrected an incorrect answer given by their neurologist to an MS patient in the audience. They kept Dr. Murray's incorrect statement, though.

MSer ...Wendy had commented that Dr. M. kept mentioning the Buffalo results in comparison to Dr. Zamboni's more impressive results and she asked, Did the Buffalo study use exactly the same equipment that Dr. Zamboni used? Because you are comparing his results with the Buffalo results yet potentially if there's difference in the actual imaging equipment which could explain some of the difference in the results? (I believe it's at 3:10/9:38)

Dr. M responded, "But in fact they did..." (implying they did use the exact same equipment and still the results differed so).

As I've mentioned before, no one from the MSS - none of the key players - Pres., research or communication people or any other many present MSS staff member corrected this wrong statement or the many other wrong statements made throughout the webcast.

When I had the microphone, I addressed Wendy and the panel, and said that Dr. Zivadinov himself had stated that he hadn't used the same equipment or followed the same protocol as Dr. Zamboni and that could explain the differing results.

The MSS also edited out my question about the recent Stanford study results that showed MS drugs to be helpful to some patients and harmful to others, causing a worsening of their condition. The moderator paraphrased my question and she and the neuro addressed only 1/3 of the question...while the MSS didn't address it at all. I brought in their "advice" that patients not receive CCSVI testing and treatment until further and larger research and trials are done...and asked if they would stop the drugs until further and larger research and trials (which are obviously needed now) are done? Will they tell newly diagnosed about these findings and not prescribe the drugs to them until more is learned?

Dr. M replied that they wouldn't stop the drugs because they have been helpful and proved beneficial to patients. He didn't speak of the patients that the drugs have been harming and making worse...don't they matter?

Ironically, the MSS was involved in the recent 1st Canadian Patient Summit which took place in Toronto. The summit looked at the need to have the patient voice heard. And here, just over a week after the Summit, a patient's voice (mine - which was speaking the truth) was suppressed and edited out. Incidentally, 5 of us MS patients stumbled upon the Summit thanks to a posting by the wonderful Sandra (UBC site) and registered with the main organizer, although we later learned there were a couple of MS patients there who had been "invited" by the MSS.

Conspiracy? I don't know. Duplicity. Yes.

Scorpion,

We are witnessing just the "normal" process of doing science. I mean, the "normal" process is not, I'm afraid, the idealized world of pristine scientists looking for "The Truth" some people tend to think about. There are envy, betrayal, fear, greed, lots of "bad" human emotions running high.

This is a turf war, indeed.

Sorry for giving unsolicited advice, I think that it is a little rude on my part, but it could be a good idea if you read something from Thomas Kuhn:

http://en.wikipedia.org/wiki/The_Structure_of_Scientific_Revolutions
http://en.wikipedia.org/wiki/Paradigm_shift

sbr487,


1. I would not call the MS Societie's approach to CCSVI 'ignoring it" but cautious. If you want I can give you a list of MS therapies/ treatments over the last 30 years that people claimed were effective but turned out to be pseudoscience. Did you expect the MS Society to throw millions of dollars into CCSVi research based off of Zamboni's initial results?
2. I think it is great MS patients are funding the CCSVI research. If the teatment of CCSVI is proven, through rigorous scientific testing,to make a positive impact on the lives of people with MS I would hope the MS Society and other orginizations would jump on the funding bandwagon.
3.I do not necessarily agree with Freedman but I also did not agree with people screaming "cure" after Zamboni's original results.
4. So far Zamboni's findings are valueless. When CCSVI is proven to be implicated in MS and the treatment of CCSVI to be beneficial to people with MS than I would certainly say his findings have value.
5. I am not sure what Khan met by his statement but as I said I can give you a list of MS "treaments"people claimed would change the world that are now nothing more than pseudiscience.
6.I would love to see the proof showing there is no link between MS and CCSVI. I believe making that statement is as wrong as people insisting at this point there is a connection between CCSVI and MS(although based on the evidence so far there does seem to be some sort of relationship). At this point we just don't know.

Fernando I do not find your post rude whatsoever. I respect Zamboni for thinking outside the box and I was and still am interested in his CCSVI research. It just gets old reading posts on this forum from people who make it seem that anyone who does not full-heartedly accept the CCSVI theory is a traitor who should be burned at the stake.

Most all of us agree with Scorpion. You other people disgust me. If you all are so damn smart, why dont yall become neurologists?

People shouldn't bother responding, because otherwise, we have to listen to the truly aggressive and rude babble, as above....
Certain members only write explosive comments, so they can cause people to lose their temper, it's always the same little set up, with the quick follow up of support from the usual suspects...just don't bother to waste your time....

Both sides of the coin have their faults. People who are desperate for a cure may say or do things that are downright stupid, however there is definitely an anti-CCSVI sentiment among most neuros. For example I went for a followup appointment at my neuro's office and brought up CCSVI and the response was, "oh, that stupid vein thing?"

Obviously we need more scientific data on the correlation between CCSVI and MS but it is hard to ignore all of the anecdotal evidence, not just from patients but from the doctors that have treated them as well.

If research is not done, how do we know if something is even true or not. Most of the fundamental researchers mostly tend to come up with ideas. Somebody needs to take these ideas further.
Just because there were failures, it does not mean we are going to look the other way. Every opportunity needs to be given chance based on its merit. If you see their statements originally, they wanted us to forget about this and move on with "path breaking immune therapies".


The patients are getting into this only because there is a lack of interest from others. Someone tell me that research is in right hands with proper money flow, I will not open my mouth for next 1 year.


Cure, relief etc. are all terms. At the end of the day, my tomorrow should be better than or same as yesterday. That's how I would value a medicine.


Any idea that makes sense is not valueless. If you say only when the idea makes a difference to patients then most of the ideas would not have moved to realistic drugs. In any case, Zamboni's method has worked on so many already.


I agree with you. But what would be the motivation of a Dr to dismiss the work of a fellow Dr.

Just my 2 cents and believe me I have myself go through the same feeling s as are currently. However hard I may try, I still cant believe that few groups did not try to play dirty game here.

.

WhyRwehere, you are soooooooo right!!!!

Take care,
Chrystal

The data below, posted today on WebMd, breaks down what has been scientifically proven so far.

From WebMD:

In his first, small imaging study(Zamboni), all the MS patients had the blockages, while none of the healthy people did.

At the meeting, Zivadinov presented data on the first 500 participants in a new study, 289 of whom had MS. Results were less dramatic, with ultrasounds revealing blockages in 62% of MS patients, 26% of healthy participants, and 45% of people with other neurological disorders.

Miller tells WebMD that the conflicting results of the Zamboni and Zivadinov studies "raise a lot of questions."

Also, the findings do not prove cause and effect, as researchers can't say if the blocked veins cause MS or vice versa.

As for treatment, Zamboni has published a study of 65 patients who underwent an angioplasty procedure to open the blocked veins using a small balloon attached to a catheter inserted though a small incision in the groin. Most of the patients had fewer MS attacks, but the improvement was short-lived for about half.

Additionally, the study lacked any comparison group receiving placebo. Since MS often takes a remitting, relapsing course, it’s not known how many would have improved temporarily anyway, Miller says.

Psst!

WebMD is sponsored by Rebif...

I do not think Rebif is a company. Please share what part of the article you see as misinformation and what proof you have to offer showing otherwise. I would assume I will not get an answer but instead some kind of post saying to just ignore me. I do not want a huge argument just facts refuting the article from webmd. Please share.

A test which might be possible using existing data, and data that is being collected now, both in experimental trials and not. No new info needed?

If problems with limbs are one-sided, as they often are, well the brain is two-sided. People who only have one jugular, or have stenosis only on one side, well shouldn't their movement problems be on that side of the brain, which controls limbs on the other side of the body? Don't they have more lesions on that side?

I.e. does the problem follow the side of the body the problem with the veins is on, or not, with some statistical validity? If it does, it it much more likely related to the veins, and if it does not, it is less likely related to problems with the veins. Unfortunately that is what the term azygous means: it's only on one side, not both. So it can't be used. People that have already had the operation for CCSVI can be polled, especially if they have had subsequent improvements that were one-sided *and* the CCSVI is one-sided. There are two jugulars, left and right. If the CCSVI is one-sided, wouldn't the person also likely have more lesions or symptoms on that side?

And the disability? The man from Ottawa who went to Poland said he han foot drop on one side, and I think only stents on one side. Were they on the same side?

The problems with the limbs are usually one-sided. So what physical thing can be tested that also is also one-sided? Something we can see on MRI's? MRVs?

Probably I am missing some important detail that makes it impossible or very difficult. At least I tried. I just want to see this thing resolved in an acceptable, logical manner too.

I think people (including neurologists) have to trust surgeons not to screw up, especially those who have lots of experience doing this or similar surgery.

The migrating stent will not be repeated. The neurologists would start using real bullets if it were. I think Dr. Simka has injected a bit of sanity into this debate.