This Is MS Multiple Sclerosis Community: Knowledge & Support

I believe a class action lawsuit should be started to allow Individuals to request CCSVI if they so choose to investigate this as a procedure to deal with any blockages in their Veins.

Any person in Canada can go to their doctor and have a diagnosis for a circulatory blockage found and angioplasty then performed, except MS patients it seems. Angioplasty is apparently controversial when it comes to MS patients but not so for the millions of people who have had it worldwide since its inception.

I believe that this is a case of discrimination based on disease and that a human rights case needs to be brought before the Canadian Human Rights Commision to allow this procedure to be performed on MS patients without the need for trials. These trials on the angioplasty procedure have been concluded for sometime with millions of people already having this procedure with very high success rates.

Why don't we just do away with trials and rely on anecdotal information for all treatments? Who needs scientific studies anyway!

i was just reading the philosopher and the wolf and stumbled on a relevant para... don't have time to hunt down the quote but the essence was, once you have enough anecdotal evidence it becomes something else: data.

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

I have been in two clinical trials, and have a degree in applied statistics. I warn you now. The data accumulated and spewed out in most studies should be taken with a grain of salt especially when it comes to conditions like ms that manifests differently in each person afflicted. The questionnaires and physical assessments are geared toward the drug company's advantage.

I am not defending CCSVI nor and am I dissing it. I'm just sayin'.

Marcia

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Marcia

Well said ssmme.

Whatever importance we attach to scientific method it will always boil down to a judgement of whether you trust the the results which are published. Appropriatemness of an experimental design and the exactitude of it’s execution can be assessed in a logical and objective way. But can we trust the organisation which is publishing the results not to select those results which support their case, or to focus on the actual questions we need answering? From what I have heard so far I have serious doubts.

Like it or not there is an alternative source of evidence. Not all evidence is experimental evidence. Naysayers consistently refer to individual patient reports as ‘anecdotal.’ Having had the procedure myself I do not perceive my improvements as anecdotal. I am assessing my own symptoms from very direct observation. I am able to do things I could not do before. My friends and family can see me do these things. This too is their direct observation. Prima facie evidence is the correct term for this. It is quite possible that as this prima facie evidence builds up there will come a time when experimental validation becomes an interesting but inessential adjunct.

I am not advocating uncritical acceptance of the theory, let the scientists carry on investigating that. But what I am saying is let us look at the histories of the patients which have had the procedure in a systematic way and see what it says. There is nothing unscientific about this, it is done all the time. And it is entirely appropriate to the phenomenon we wish to study. Both Zamboni and Zivadinov have already suggested it. The insistence that CCSVI should be investigated in exactly the same way as a drug trial is unjustifiable. Because the effect we are trying to measure is so much more obvious than what happens with drugs. It would be using a sledgehammer to crack a walnut. In experimental terms this is called using oversensitive instruments.

People are going to carry on having this procedure whether we like it or not. For goodness sake let’s look at this evidence!

I think we should be treated for CCSVI under trial conditions However if those trials are not being set up or funded then we should not be denied treatment.

Its a catch 22 situation for us otherwise, trials are needed to prove the theory but if no-one will pay for the trials should we have to suffer as individual human beings?

Thanks ISLANDER for find this

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That's not the point ...
Do you think MS patients are naive to accept anything thrown at them ...
Most of them don't have time for "clinical trials" and they don't have faith
that something concrete is ever going to happen ...

Can you tell us who is supposed to do these?
And who is to fund these?
And what is the timeline for that?

My humble opinion---if it doesn't hurt you or cause you to mortgage your house and soul, WHY NOT TRY??? What in God's name do you have to lose! My daughter continues to thrive...with NO MS meds! All she did was "try"...and for her, it worked.

I would bay at the moon and eat my toenails if it "might" help....

What ya got to lose!

Marcia has a point. A trials nurse made the statement to me that you can design a study to prove pretty much anything.

But it's not just that the reports on CCSVI are anecdotal. There's nothing wrong with anecdotal evidence when trying to verify something. The problem is that so far there have been mostly self-reports, spread by word-of-mouth over the internet. No one performing these procedures, other than the Zamboni group, has compiled any data on the effects of treatment.


In what way?


Using the most sensitive instruments for experiments usually isn't a problem, unless you're trying to hide something.

I am not saying that anecdotol evidence is not important what I am saying is we need to be careful not to replace anecdotol evidence with scientific evidence.. There is always the possibility of a placebo effect with any new treatment and also the possibility that the risks associated with procedure outweigh the long-term benefits. The term "liberation" is in itself misleading in that the definiton of liberation is to set free from a situation or condition. Has anyone seriousley felt that they have been "liberated" from MS since they reived the procedure? Jim Dav it has been proven that heart diesease is caused by blocked arteries which is the reason for rhe angioplasty. It has NOT been proven that blockages cause MS so that would be why one is covered and the other is not. It seems to me, this is only my opinion, that the Buffalo study even put more doubts in people's heads that CCSVI was the cause of MS. IF CCSVI were the cause of MS EVERYONE with MS should have blockages. It should also should be fairly easy to identify whether people with CIS will develop MS because if the blockages are what causes the symptoms logically they would have some sort of blockage, right? To many question remain for a class action lawsuit. Do i think people with MS are naive? No. Desperate for relief from this shitty disease, yes.

Either this is one more deliberate attempt to mislead people (which is classical of neuros we have seen so far) or ...

Dr. zamboni himself has made is clear that liberation was meant to mean liberating the blood so that it can flow normally.
Even otherwise, what is liberation to me is not to others ...

Quote:
The insistence that CCSVI should be investigated in exactly the same way as a drug trial is unjustifiable. Because the effect we are trying to measure is so much more obvious than what happens with drugs.

You can assess the effects of liberation simply by comparing the symptoms which were present before liberation and those after. Provided you do this enough times and wait to see that the effect is lasting you have proved the efficacy of the treatment. All you need to do is record it all systematically and in a way which makes the data comparable across subjects. If you wanted to apply controls to this you would need to show what you were trying to control for and why. It is not a given that any experiment needs to be blinded and have a control group. It depends what you are trying to prove.

Quote:
Using the most sensitive instruments for experiments usually isn't a problem...

Really? Have you ever tried to tune a carburettor with an over-sensitive flow meter? It is impossible. With a correctly damped meter it is easy. The problem with oversensitive instruments is that they introduce more noise and make it more difficult to see the effect you want to see. The simple point I am trying to make is that we do not need to be over clever in testing the efficacy of 'liberation' for very many people the difference is chalk and cheese. All we need is a relatively simple survey.

That's pretty much what is done in any drug trial, except they generally use relapse rate as a primary measure. Almost any drug trial will have some requirement on the number of relapses prior to entering a subject. And they usually record other measures (EDSS, MSFC, etc), to get trending data.


No, I haven't tuned any carburetors - all the cars I have owned have been fuel-injected. But, I perform measurements on a very low voltage analog and RF circuits almost every day. You have a different definition of sensitivity than me. What you are referring to is something that is too jitttery- that's a problem with the instrument. Sure, if what you using to measure the effects of the CCSVI procedure introduces it's own error, then that's a problem. But using methods or markers that can detect small changes isn't.

Hi Patientx

I was surprised at what you said about drug trials. I have very little knowledge of them so I thought maybe I was mistaken. So I had a quick look at one for Tysabri. It talked about measurements where improvements were a few points on a fairly large scale. Some examples are 34.25 goes to 36.66, 43.13 goes to 46.77 and 25.12 goes to 26.19. That averages out at about 5%. This is a very small difference, I accept that if you apply a significance test you can prove the change is real. But I would say 5%, though real, is too small to be perceptible by most people.

That is not what I was talking about. The differences a substantial number of people are reporting (me included) are nearer 100%. E.g Can you see clearly now - yes, Could you before ? - No. And you don't really need to apply any significance tests when the difference is that big.

About the sensitive instruments that I mentioned. Perhaps using a concrete analogy has actually obscured what I was trying to say. The instruments I am talking about are the procedures used to assess/detect an effect in an experiment on patients experience. The 'noise' in this case is the effect of intervening/confounding variables in the experiment, biases if you like. The so-called placebo effect would be one, When the effect you are trying to measure is small these biases have a greater effect than when the effect is large. I suspect we don't actually disagree on this.

But my contention is still that drug style trials are not appropriate or necessary to see/prove the effects of 'liberation.'