This Is MS Multiple Sclerosis Community: Knowledge & Support

Just curios what you all think about the burden of proof issue the CCSVI proponents are having to go through.

Of course everyone wants as much proof as possible, but at what level do you say "OK, we have enough to start offering treatment?"

Is is a double standard to require a high burden of proof on the CCSVI to MS link before MS patients can be tested and treated? I ask, because what proof has been given to MSers and their families about the Autoimmune theory?

How can a Neurologist (or any other doctor for that matter) claim, "We need to see more proof before we treat this" when there isn't a single bit of proof that supports the currently accepted treatments of MS. Its ALL FKIN THEORY, and I don't know about you but my anger in this stems from this very fact. How are you going to deny diagnosis and treatment of a MS patient's messed up veins because it doesn't jive with the current THEORIES (not current FACTS).

Pisses me off that these neuros can sit back and comfortably/legally base their treatments just on a fkin unproven theory but CCSVI may have to wait up to 2 years (according to the new article in Buffalo) before it can be tested enough to be legal treatable?

BS....and its really starting to piss me off more and more every day.

Oh yeah, and tell me again how the currently approved treatments have been formulated and tested? EAE? REALLY? CCSVI flies in the face of so much of the established medical community built around MS this is not only groundbreaking for MS patients its ground shaking for the medical community and begs for answers in so many areas.

Johnnymac,

Great rant ! I think you have expressed the frustration that all of us with MS feel. For two years now I have blindly and without question injected myself with Copaxone because my neurologist says it is the thing to do. I was told to educate myself about MS. And when I did educate myself all I discovered was how little is really known about the drugs we take and the disease itself. MS seems like this intricate mysterious insidious disease that only the highly educated can understand. It seems so clear to many of us now that CCSVI is inextricably linked to MS. The wheels of academia and medicine and governments are full of inertia and run slowly. My favorite phrase from Dr Zamboni is "Evidence, Evidence, Evidence". Dr Zamboni also knows about those rusty, squeaky wheels. he knows that no one will be convinced without the preponderance of evidence in favor of CCSVI.

The problem is, many of us cannot wait. So Zamboni needs us to push this through because so many young people are diagnosed with MS and deteriorate throughout their lives. I was pretty old when I was diagnosed. I was 60 !! (now the cat is out of the bag, LOLOL). And for me MS is horrible. How much worse is it for someone who is 20 or 30 ?

Your anger is justified...

ozarkcanoer

JM:

My friend, I do not see you as angry. I see you as normal, healthy and brave. You are as a man should be, once were and obviously can be again.

Your wife is beautiful. I thought so when I first saw her picture.

Thank you for the expression of your heartfelt exasperation.

When things seem complicated it's because someone is making it so, not because it is. Complicated = frustrating = feeling like screaming = sorry, you're not allowed to. It's a sign of insanity to get frustrated, say the wrongdoers shaping popular opinion in the media, movies, doctor's offices. Now that is crazy right there...

The reason the CCSVI thing is slow is because they want to bring it out of the closet after all these years (the differing opinions are just for show) but they can't do it quickly because of lawsuits.

So they have to pretend absolutely everything, every step of the way, taking it all very slowly so no one will suspect a thing and sit there blinded by impatience. SMOKE and MIRRORS, baby!

I am convinced that this CCSVI cure is no eureka moment thing. When I see Avis Favro on the beat I immediately start to see monkey business. Her report was a little too dumbed down, too aimed at appealing to the gullible. Too much on the human schmaltz, "doing it for love" thing. Make me puke!

The MS industry wants to bring the jugulars into it now because of course this is the cause and they have known it all along. However as I said, it has to look like a FKING miracle... (to use your word!) They can't bring it in too quickly otherwise everybody says what took you so long and BTW you harmed and killed lots of people.

Something has happened, either they have reached their goals, or something else is on the front burner that we don't know about yet such that MS can be dumped as the cover they have been using to show they care about the brain injured. They sure as hell don't care about them elsewhere. There are thousands of young kids hurting themselves skiing or whatever and getting sliced up for their organs even though the kids' lives can be saved.

Every slippery slimeball relies on the magic word "miracle" these days. Get Avis Favro to say this and the foolish masses are eating out of your hand because this is where they have been trained to go. Make me puke!

All thats going on here is timed-release tactis. They gotta play hard to get, good cop--bad cop, and engineer it so that they agreed to the CCSVI treatment due to "public demand" and not because they wanted to. There will still be all sorts of sh$$t going down like someone will die from the treatment and then they'll say, "oh we went into it too fast... see?"

Lots of fun and games... the delay will serve to make people forget about suing. Like a kind of implied blackmail.

If my son were alive I'd go to Poland and get it over with. I wouldn't trust anyone or anything in Canada or the US. Too many shysters. It's not the procedure itself, it's how they are covering themselves that alarms me.

They are so guilty they glow in the dark. It is disgusting.

Fine, I know ordinary people are horrendously stupid nowadays especially those who don't have traditions or taboos to protect them but that is a feeble excuse to take their lives. It's one thing to sell them a blender or exercise equipment on 3AM television and numb them with miracles in the Crystal Church (or whatever) but to make them sick for profit and coverup is heinous.

You can bet the wrongdoers monitor these websites and make themselves feel better as they watch their victims cope like smiling idiots and make jokes and share stories. They say to themselves, "ah look the MS people are happy, they're using the expression 'when my house burned down I could see the moon.'"

To heck with all this syrup. Good JM for saying your manly piece. I'm a woman and I say it!

If there's anything I can help you with, please let me know.

You're confusing theories with treatments. They are different, and one doesn't always precede or motivate the other. The existing CARB treatments have undergone extensive long-term testing to "prove" that they reduce disease progression (in RRMS, at least), and that they are safe for long-term use. Whether they're based on "autoimmune theory" or "Aunt Eustice's Theory of Egg Salad" is mostly academic. They have been proven to work and to be safe for long-term use. Whether or not scientists fully understand why they work doesn't affect their usefulness. I understand aspirin was used effectively for a very long time before much was understood about how or why it worked. That's fine.

CCSVI, on the other hand, is a theory about the cause of MS. It is an unproven theory, much like the autoimmune explanation for MS. "The Liberation Treatment" and Dr. Dake's stent insertion, on the other hand, represent treatments. The CCSVI theory predicts these treatments will help, but it makes no predictions about the risks and long-term implications of any specific treatments. Dr. Zamboni has been pretty clear on this point. Before these treatments can be widely accepted and recommended, they need strong evidence that they are both effective and safe. Today, they lack strong evidence on either point.



This is incorrect. There is a lot of proof supporting the safety and effectiveness of the currently accepted treatments. Granted, they don't work as well as we'd like, and scientists don't always understand why they work, but they do work.


You misspelled "fascinating".



Again, what you're apparently angry about is that the theoretical explanation for why the current treatments work is unproven, yet those treatments are accepted. On the surface, this does sound unfair to the situation for CCSVI treatments, e.g. Liberation or stents. But the huge difference is that the current treatments have been demonstrated to be safe and effective in large scale placebo-controlled blinded studies, and their safety has been demonstrated through 10+ years of their use in many thousands of patients. The same cannot be said for jugular stents as a treatment for MS, for example.

Seriously, all you people who are in a tizzy about getting CCSVI treatments widely accepted and available, the best use of your energy is in fundraising and other support of clinical trials that will provide proof. I believe the Buffalo study is seeking donations, for example.

/Scut

scutfarkus,

I have made a donation to the Buffalo study. Have you ?

ozarkcanoer

you are right, the existing CARB treatments are reducing disease progression. just like if you have brain tumor, Vitamine C is useful, safe and reducing disease progression...

Good on you. And yes, I have donated as well, but it seems you're missing my point.

The point I was trying to make was that the lack of widely available CCSVI treatments today isn't evidence of a double standard compared to CARB drugs.

/Scut

How do they know that its not just the nature of RRMS at work? I have a hard time hanging a hat on a stated high 30s% efficacy rate on the crab drugs that are ONLY given for RRMS patients. Its too convenient and too many variables for me to be considered proven. Marketed? Yes. Proven? No.



I don't disagree with the spirit in which you state this; however, its not like there is a complete lack of information and CCSVI was a theory born in the basement of a mad scientist. You've read the studies I assume, you've read the old (and I do mean old) studies and reports of high iron deposits and venous implication in MS patients. How is getting tested for CCSVI and getting an angio done any more risky that taking Tysabri? Stents are risky, but you're throwing out the baby with the bath water if you think that's the only option available. Even if only a small percentage of MS patients were candidates for Angio it would be at least a starting point, a non-risky starting point.


Are the crab drugs effective and safe? Maybe, its kinda convenient to hide results of efficacy behind a RELAPSING disease and just throw out a "sorry folks" to those with progressive forms of MS....lets ask the families of MS patients who have dealt with tysabri related PML. What do you think they would say about long term safety of CURRENTLY APPROVED MS therapies

I just want to add, I do like to argue/debate so I hope nobody takes offense to anything I say. In a few months I believe this will all be a mute point as things take hold and more and more doctors are willing to treat a new disorder called CCSVI.......the next step down for my wife would probably be a wheelchair, I hope she and the thousands upon thousands of MS patients around the world don't have to suffer any more than necessary just to placate the scientific and insurance communities.

Doctors want a signed waiver of liability? I GUARANTEE there would not be a shortage of patients asking where to sign.

Scut

I simply disagree. Per JohnnyMac's thoughts (I agree great rant) and, as an example of something that typically "passes" as "proof" in this regard take a closer look at the latest NMSS missive on CCSVI It states in part:


They provide a link to "ample evidence of proof" on their site. That "ample evidence" link ultimately takes you to this abstract:

Real-life impact of early interferon beta therapy in relapsing multiple sclerosis, which concludes:

I've skimmed the article as well (not that I understand all the stats), but, in the Discussions and Conclusions, the authors themselves describe it as an "exploratory analysis". Generally, exploratory analyses aren't accepted as scientific proof of anything and the authors themselves state the interferons "may" delay disability progression.

Isn't it at the very least a bit weird that the NMSS used a citation which concludes that early use of interferons may impact disability progession in people with RRMS as proof of ample evidence of their benefit?

Perhaps the NMSS should apply the same standard of "proof" to CCSVI that they do to the interferons. There are CCSVI exploratory studies and interventions may delay disability progression.

That's my rant.

Sharon

And I think you're confusing treatment and diagnosis. The (unknown) risks of stents are one thing, but to diagnose stenosis of the veins is easy, quick, and save. If there'd be just a few more institutions which researched that, you could say whether the theory of the relationship between CCSVI and MS is true within ONE MONTH.
That would be a first step. The next step would be a research about which treatment is effective and save. This might take a while, but if the theory is proven through diagnosis quickly before, it would also hugely accelerate the treatment research, as there would be many more professional that would attend to it. So proving the theory is the first important step, but that's what's going on at Buffalo. (That's one link between theory and treatment.)

One more thing: I think there's another link between theory and treatment: It's cure. If you know the cause of a disease, you can search for a cure. If you don't know the cause you can only use the try and error method to find something that helps a bit - if you're lucky.

_________________
"There is only one good, knowledge, and one evil, ignorance." Socrates

Good points, cah.

And great rant, johnnymac. If but we all had advocates like you and cheerleader.

_________________
My name is not really Johnson. MSed up since 1993

And I'd like to add that sometimes I get a little worked up reading posts from some of our less rational posters, and then that built-up frustration comes out when I finally reply to a post, even if it's unrelated and/or rational.



I strongly believe that if you want a medical procedure and are willing to pay for it, you should be allowed to do it. Is it the case that you're trying to get the procedure but people won't take your money for fear of liability? If so, I agree that's wrong and would be horribly frustrating.

And I'll also add that if my own MS were farther along, so that I felt great urgency and more willingness to take risks, I'd seriously consider pursuing angioplasty myself. As it is, I'll be closely following developments during the next few months, with fingers crossed. I'm hoping that not only does CCSVI get validated, but improved interventions will be developed that are better (safer and/or more effective) than what people are doing today.

/Scut

What a great discussion. I'm on my third read through. Thnx guys and gals. Much to chew on.
Mark.

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

The short answer is "math". A somewhat longer answer is double-blind placebo controlled studies with statistical significance. In short, placebo controls (e.g. patients who also have RRMS, but don't get the treatment) are the tool used to differentiate the effect of the drug from other factors, including "the nature of RRMS." It's a very powerful technique.



Honestly, I don't know how the risks compare. Even more honestly, Tysabri scares me. But one big difference between Tysabri and angio is that large studies have provided compelling evidence that Tysabri is effective. Hopefully angio will be more effective and safer, but my point is that we don't know.



I don't believe angio is "non-risky". All surgical procedures have risks. Check the thread on angio/stent risks in this forum. Some angio risks include vein rupture, and possibly stroke. But I do agree the risks seem relatively low, especially compared to the known-to-be-significant risk of just letting your MS progress.



I should have qualified my statement. What I meant was that the long-term safety and effectiveness of the "approved" MS drugs is understood. I agree that they are less than ideal in these areas.



Not sure what you mean by "convenient to hide results of efficacy behind a RELAPSING disease." It's very unfortunate that the drugs haven't been very effective against the non-relapsing forms of MS. But if you're doubting the statistical validity of the effectiveness analysis, it would help to point out the mathematical basis for your concerns.



Quite right about Tysabri. I was thinking of the CRABs, which I believe have fewer scary risks.

/Scut