Dr. Sclafani interview

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: Dr. Sclafani interview

Postby drsclafani » Wed Dec 22, 2010 6:55 am

concerned wrote:
concerned wrote:
Shouldn't people only be getting it done in a phase I trial or something?


drsclafani wrote:we do not need phase one trials for angioplasty of the jugular vein. that is nonsense fed to you by someone who appears to know nothing about venous angioplasty.


Well, you could note the "or something" as I am not a medical professional and I don't know all the subtle nuances of the terminology, however, I am trying to learn.

I just meant that in treating MS, it should be clearly demonstrated to the medical world at large that it is a viable MS treatment and enough to justify the hysteria and paranoia that has engulfed this grassroots movement. (If you want to argue that point I have treasure troves of messages insinuating that I'm an employee of a big pharma firm.)

Emotional pleas are all fine and dandy, but inadequate in satiating the desires of the scientific community, namely, a desire for proof. So please just clearly demonstrate it in a reputable journal how CCSVI causes or is a major co-morbidity factor in MS and how "Liberation" could alleviate MS symptoms and we can end all this suspense.


Fair point. i wish it were so simple. it will take five years to prove what you ask, at best. in the meantime, patients have diseased veins which do cause symptoms in patients Without MS. Why must we show an association between the two? A stenosed vein is a stenosed vein regardless of what the co-morbidities are. Angioplasty is known to improve cogniitive dysfunction, fatigue, confusion, to name of few symptoms of venous outflow obstruction.

i do not treat ms.
i treat symptoms such as fatigue, memory and cognitive deficiency, etc caused by venous stenosis. please show evidence that anything currently works for these problems. currently prescribed medications for some of these symptoms are not fda approved for treatment of ms.

concerned, the data is being collected. in the meantime people are dying with no good options. This will just have to run its course.
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Postby pklittle » Wed Dec 22, 2010 6:58 am

per wikipedia

Efficacy = "In a healthcare context, efficacy indicates the capacity for beneficial change (or therapeutic effect) of a given intervention"

I think this is the "something" that concerned elluded to. Don't phase I trials not only demonstrate safety but efficacy too?
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Postby Lyon » Wed Dec 22, 2010 7:50 am

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Last edited by Lyon on Sun Nov 20, 2011 4:56 pm, edited 1 time in total.
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Postby CCSVIhusband » Wed Dec 22, 2010 8:12 am

But what if all he's treating is fatigue, cognitive issues, etc. SYMPTOMS of CCSVI ... (though many thought were symptoms of "MS", if such a "disease" even exists)

It's been stated several times he's treating CCSVI, NOT MS.


Then do we really need clinical trials AGAIN to prove that it's safe and effective to treat a venous problem that causes those symptoms? SVC syndrome? Angioplasty has already been proven safe and efficacious ...

He (and other doctors) have stated they're not treating "MS" ... they're treating those symptoms, and they know that angioplasty of those veins is treating it.
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Postby patientx » Wed Dec 22, 2010 8:27 am

But what if all he's treating is fatigue, cognitive issues, etc. SYMPTOMS of CCSVI ...

So is there anything that says what the symptoms of CCSVI are? (For that matter, does anyone have a precise definition of CCSVI?)

Given that CCSVI is a relatively new concept, how can the symptoms be so clearly defined? A study, whether phase I or II, would be useful in determining what these symptoms are, and what might be helped by angioplasty.
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Postby erinc14 » Wed Dec 22, 2010 8:30 am

i can'tget it :x . is it somewhere else ?
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Postby Lyon » Wed Dec 22, 2010 8:33 am

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Last edited by Lyon on Sun Nov 20, 2011 4:56 pm, edited 1 time in total.
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Postby CCSVIhusband » Wed Dec 22, 2010 9:30 am

patientx wrote:
But what if all he's treating is fatigue, cognitive issues, etc. SYMPTOMS of CCSVI ...

So is there anything that says what the symptoms of CCSVI are? (For that matter, does anyone have a precise definition of CCSVI?)

Given that CCSVI is a relatively new concept, how can the symptoms be so clearly defined? A study, whether phase I or II, would be useful in determining what these symptoms are, and what might be helped by angioplasty.


Fine ... last post because I can see where this would go if it went any longer than this post.

What are the symptoms of "MS" ...

Does anyone have an exact definition as to what "MS" is? (one that doesn't rely on scientists injecting a foreign substance into EAE mice that isn't a true "MS") ...

One that doesn't start with "we THINK "MS" to be an auto-immune disorder" ... and ends with a neurologist saying a lot of "we don't really know" ...

let's not forget, it goes both ways. A lot of people feel the venous problem of CCSVI better explains (and treats) a lot of symptoms than some EAE mouse - that isn't a true replication of "MS" ever will ... it makes a lot more sense too. I guess the CCSVI mice will have to prove it first ... only a few more months.

:)

Merry Christmas ...
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Postby Cece » Wed Dec 22, 2010 9:38 am

http://www.ncbi.nlm.nih.gov/pubmed/17409388
Neurorehabil Neural Repair. 2008 Jan-Feb;22(1):91-100. Epub 2007 Apr 4.

Origin of fatigue in multiple sclerosis: review of the literature.
Kos D, Kerckhofs E, Nagels G, D'hooghe MB, Ilsbroukx S.

Vrije Universiteit Brussel, Department of Rehabilitation Research, Brussels, Belgium. Daphne.Kos@vub.ac.be

Abstract
Fatigue is one of the most common and most disabling symptoms of multiple sclerosis (MS). Although numerous studies have tried to reveal it, no definite pathogenesis factor behind this fatigue has been identified. Fatigue may be directly related to the disease mechanisms (primary fatigue) or may be secondary to non-disease-specific factors. Primary fatigue may be the result of inflammation, demyelination, or axonal loss. A suggested functional cortical reorganization may result in a higher energy demand in certain brain areas, culminating in an increase of fatigue perception. Higher levels of some immune markers were found in patients with MS-related fatigue, whereas other studies rejected this hypothesis. There may be a disturbance in the neuroendocrine system related to fatigue, but it is not clear whether this is either the result of the interaction with immune activation or the trigger of this process. Fatigue may be secondary to sleep problems, which are frequently present in MS and in their turn result from urinary problems, spasms, pain, or anxiety. Pharmacologic treatment of MS (symptoms) may also provoke fatigue. The evidence for reduced activity as a cause of secondary fatigue in MS is inconsistent. Psychological functioning may at least play a role in the persistence of fatigue. Research did not reach consensus about the association of fatigue with clinical or demographic variables, such as age, gender, disability, type of MS, education level, and disease duration. In conclusion, it is more likely to explain fatigue from a multifactor perspective than to ascribe it to one mechanism. The current evidence on the pathogenesis of primary and secondary fatigue in MS is limited by inconsistency in defining specific aspects of the concept fatigue, by the lack of appropriate assessment tools, and by the use of heterogeneous samples. Future research should overcome these limitations and also include longitudinal designs.
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Postby concerned » Wed Dec 22, 2010 10:06 am

Cece wrote:http://www.ncbi.nlm.nih.gov/pubmed/17409388
Neurorehabil Neural Repair. 2008 Jan-Feb;22(1):91-100. Epub 2007 Apr 4.

In conclusion, it is more likely to explain fatigue from a multifactor perspective than to ascribe it to one mechanism.


I would agree with that point.

If CCSVI has nothing to do with MS then why are we talking about this on ThisisMS and why is it always billed as an MS treatment? People always talk about stopping progression, shouldn't they be corrected on that, as "liberation" is only for treating fatigue, etc. and not about treating MS?
Last edited by concerned on Wed Dec 22, 2010 10:14 am, edited 1 time in total.
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Postby CCSVIhusband » Wed Dec 22, 2010 10:12 am

concerned wrote:
Cece wrote:http://www.ncbi.nlm.nih.gov/pubmed/17409388
Neurorehabil Neural Repair. 2008 Jan-Feb;22(1):91-100. Epub 2007 Apr 4.

In conclusion, it is more likely to explain fatigue from a multifactor perspective than to ascribe it to one mechanism.


I would agree with that point.

If CCSVI has nothing to do with MS then why are we talking about this on ThisisMS and why is it always billed as an MS treatment? People always talk about stopping progression, shouldn't they be corrected on that, as "liberation" is only for treating fatigue, etc. and not about treating MS?


Sure did a lot more than treat "fatigue" in my wife's case ... (and a lot of other people's cases)

Liberation treated almost everything her neurologist - who is full of "we don't know"s - called "MS" symptoms. - but it also treated the CCSVI symptoms we've agreed upon (fatigue)

But if you want to just call CCSVI treating fatigue and put it aside from MS, and let everyone who wants their fatigue treated - regardless of their "MS" ... I'm all for it, and I think a million others will be.

Let's treat fatigue ... we're all on board now! (if it does something for the other symptoms as well ... GREAT).


:D

That's a circle of logic I'm willing to play in.
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Postby debp » Wed Dec 22, 2010 10:30 am

If CCSVI has nothing to do with MS then why are we talking about this on ThisisMS and why is it always billed as an MS treatment? People always talk about stopping progression, shouldn't they be corrected on that, as "liberation" is only for treating fatigue, etc. and not about treating MS?


Isn't MS just a bundle of symptoms? I don't think anyone treats MS, they treat symptoms that are caused by something they have called MS, for lack of better understanding.

i do not treat ms.
i treat symptoms such as fatigue, memory and cognitive deficiency, etc caused by venous stenosis. please show evidence that anything currently works for these problems. currently prescribed medications for some of these symptoms are not fda approved for treatment of ms.


The bar on efficacy for MS treatments has been set fairly low, arguable too low, but CCSVI treatment does hit that bar and a little more.

Also the continued calls for a phase 1 trial are really bugging me. There was a phase 1 trial. It was in Italy, I think you have all read about it. It showed that the procedure is safe, side effects were rare and results were phenomenal when compared to other currently available therapies.

I understand that isn't good enough for a couple of you, but to keep saying that is hasn't been done is disingenuous.

BTW Dr. Sclafani good interview :)
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Postby concerned » Wed Dec 22, 2010 10:36 am

debp wrote:Also the continued calls for a phase 1 trial are really bugging me. There was a phase 1 trial. It was in Italy, I think you have all read about it. It showed that the procedure is safe, side effects were rare and results were phenomenal when compared to other currently available therapies.


Have these results been replicated anywhere? That's the usual process that science takes.
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Postby patientx » Wed Dec 22, 2010 10:45 am

debp wrote:Isn't MS just a bundle of symptoms? I don't think anyone treats MS, they treat symptoms that are caused by something they have called MS, for lack of better understanding.

No, the definition of MS involves quite a bit more than this, and I am not sure why people purposely try to oversimplify it. MS involves the destruction of myelin and nerve tissue, caused by T-cells and other immune cells.

Neurologists administering Tysabri treat MS. Those that have administered Campath or Revimmune have treated MS. I know most here don't like the CRAB drugs, but doctors prescribing them are treating MS.
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Postby CaptBoo » Wed Dec 22, 2010 10:54 am

Yes. These results were replicated on me in Atlanta by Dr. Sullivan in October. That's plenty scientific for me. I'm getting better. Those who feel the need to wait for even more evidence will continue to get worse. Of course that is your choice.
<div>There be no dragons   ...Reese Palley</div>
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