Studying MS as a scientist. Would you risk it?

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

Postby willowford » Wed May 04, 2011 11:33 pm

1eye wrote:I'm not going to start from first principles and argue anything. I am saying, with *this* treatment with *this* history in *these* places all over the world, and the knowledge about it that exists, and the many strong proponents and supporters of many varieties, with all that is known today, the burden of proof should be on those who would obstruct and prevent this procedure from happening, that there is a good reason to do so. The burden of proof of a crime should presume innocence. These people are not scam-artists. This is not snake oil. This is not junk science. This is not criminal enterprise. This is not quackery. This is not unfair treatment of the disadvantaged or the sick or the desperate. It reminds me of a rape victim who must prove she didn't lead her victim on. It is almost as if the victim must show just cause why they should be allowed to pursue their own health!

Doctors are not criminals. They are not fraudsters. They are not con-artists. Let them practice medicine.


I agree with all your points, except of course the usual - this isn't a legal case -If it were, then you're right, the accuser should prove the guilt of the opponent.

But there are no accusations here. There is an answer that needs to be found - whether something works, how much it works, who gets the best results, who doesn't, what are the side effects, how to avoid/treat these, how to improve the procedure....etc. In reality, it's not one side vs the other as it's being portrayed. The "evil" vs. "good" approach doesn't benefit anyone.

Of course the procedure is not any of the things you noted - absolutely not - but the "blocking" isn't really blocking - it's just waiting for more data (broken record here).

The reason they wait rather than dive in feet first at every new finding? More than enough examples of good and bad decisions on the part of health policy makers who dove in before there was enough data to go on.

They'll get criticized either way - if they wait some complain that they're blocking treatment and it won't be available to many patients who are in a dire situation; if they approve quickly ... well, just ask the moms who took tholidomide during pregnancy because they lived in countries where it was quickly approved, if they were satisfied with that decision? Quick approval there is now known as one of the biggest medical tragedies of modern times! (lucky those folks that acted fast to approve).

Online research wasn't around then - but even if it was, no amount of googling would have prevented this since the studies showing the real effects were non-existent that early on. If you were a policy maker, would you have taken that risk?

(Please interpret above accurately; NOT at all suggesting that this is what will happen with CCSVI so don't even go there; I am talking about risks of approving too quickly)
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Postby willowford » Wed May 04, 2011 11:54 pm

frodo wrote:If this deals with the Zivadinov case, I think people is upset with the conclusion they made, not with the published data.


Scenario wasn't related to that study (the research findings I made up as examples of things we won't like; the general story, scientist finds something and reports it and is viewed in the ways described above because of what he found, that part is the "true story")

I don't read conclusions myself because they have trained us to look at statistics and make the interpretation (almost always falls in line with the author's if you do it right because numbers are clear). But of course, your point stands... findings need to be interpreted accurately not just by everyone (my point) but also by the authors (your point).

If I recall from the abstract though, Zivadinov et al concluding statements were conservative - not over the top (I'm overly sensitive to these types of things so I would remember being annoyed). I think they concluded that their data "suggested" (something like that) that CCSVI may be a result, not a cause, which is accurate based on THEIR data (doesn't mean it's the final answer). And they emphasized need for more research to determine (acknowledging their data is certainly not the end of the issue).

Thankfully, authors are NOT permitted to make overly conclusive statements like "therefore, ccsvi is not a cause" - too much generalization there - their work will be returned for revision. They can only speak to their own study ("our data showed that..."), a lot more objective.

(another example of why it is flawed logic to conclude that a researcher who reports negative findings is anti-"whatever theory" = Zivadinov and his team have been leading more research and presentations on the topic, trying to explain how the mechanism is proposed to work, are now exploring treatment effects as well as the iron deposition hypothesis related to CCSVI <-- same guys that got a lot of hell because they wrote a very mild conclusion based on one of their studies)
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Postby griff » Thu May 05, 2011 1:20 am

willowford. very well spoken. I fully agree with you.
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Researchers/Reviewers with Tunnel Vision

Postby MarkW » Thu May 05, 2011 2:47 am

You have omitted one key element in your senario, Willowford:

A literature review.

The anti CCSVI papers published recently fall into the same trap. The literature review demonstates that the methods used are applicable to produce the conclusions being published. Also conflicting data must be addressed if the paper is considered to be robust science.

The failings of a lot of current research against CCSVI is that it is based on a screening methodology rather than a definitive diagnosis method. One neuro led paper is diferent -
Yamout B, Herlopian A, Issa Z, Habib RH, Fawaz A, Salame J, et al. Extracranial venous stenosis is an unlikely cause of multiple sclerosis. Mult Scler 16(10): 1156–1172.
They used catheter venography (selective venography) and found extracranial venous stenoses (EVS) in pwMS. This paper adds to the data that pwMS have EVS.

If the anti CCSVI papers had reviewed the literature they would find this paper and others saying that selective venography is the gold standard for the diagnosis of EVS and CCSVI. Also that Doppler Sonography needs special training.

Some pro CCSVI researchers have also omitted a literature review in their papers. They have produced onclusions which focus on vascular explanations for MS, which are only part of the complex MS picture.

Prof Zamboni clearly sees CCSVI as part of the complex MS picture when he describes the multifactorial nature of MS. Calling CCSVI a syndrome is also important as syndromes are treated before the causes of the disease are understood.

So Willowford are you in the naysayer camp with Colin Rose et al ?? Are you prepared to look at all the evidence ?? That is why modern medicine attempts to be Evidence Based Medicine.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Science is a risk

Postby MarkW » Thu May 05, 2011 3:01 am

I study MS as a scientific reviewer. Yes, I do risk it.
As a consequence I am critised by CCSVI naysayers and MS liberationists.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: Researchers/Reviewers with Tunnel Vision

Postby griff » Thu May 05, 2011 3:15 am

MarkW wrote: Prof Zamboni clearly sees CCSVI as part of the complex MS picture when he describes the multifactorial nature of MS. Calling CCSVI a syndrome is also important as syndromes are treated before the causes of the disease are understood.

MarkW


Hi Mark. I really like your posts as you seem to have a scientific approach to this whole thing. You have to also understand many of us who did not experience any improvements after the operation and we see lots of contradicting info everywhere.

You mentioned that dr Z clearly sees the complex nature of MS and CCSVI is only part of this. Early statements from him seem to me indicate something different, e.g.:

The researcher's theory is simple: that the underlying cause of MS is a condition he has dubbed “chronic cerebrospinal venous insufficiency.” If you tackle CCSVI by repairing the drainage problems from the brain, you can successfully treat, or better still prevent, the disease.

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Great Scientists Move On

Postby MarkW » Thu May 05, 2011 3:30 am

A great researcher like Prof Zamboni adapts his theory and ideas when more evidence is discovered.

You had de-stenosis Griff but was your diagnosis using the latest methods ?? Were your vein valves checked and treated ?? The diagnosis and treatment of CCSVI is being developed, are you asking the right questions to the right doctors ?

A great researcher like Prof Zamboni adapts his theory and ideas when more evidence is discovered.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby bluesky63 » Thu May 05, 2011 5:46 am

Griff, it would be useful to provide the source of your quote. It could be a reporter's summation/interpretation, particularly since it's in English. I think the further away we get from original sources the more reinterpretation there can be. Classic telephone game. Is it from an article? Incidentally, griff, I think you indicated you are in Europe. What is your native language? Perhaps if you speak Italian you could go straight to the original. :-)
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Postby 1eye » Thu May 05, 2011 6:31 am

No. You are right. This is not a legal case. Except that of course, it is a legal case in a Human Rights Court in Canada. It should be a legal case if people start getting denied insurance coverage in large numbers because of their expedient diagnosis as 'MS' patients, which does not do so much for *them* but which classifies them with the expensive end of the industry. This should be a massive class action in that situation.

It is not a legal case where it should be, where professionals have been sniping and defaming each other in the public eye for literally years now over this situation. People used to know how to behave. That is not a criminal matter.

What about people denied procedures that might save their lives? Again, burden of proof, burden of innocence. Do the dying have to prove that a procedure might help them? Are we afraid it might make things better? Isn't it up to somebody to prove that it will *not* make them any better? Isn't that the burden? Because it's the same procedure. Only in one case you want doctors to prove it will not kill their patients and that it will help them. In the other case you want the patient to prove it will make them the least bit better and will not hasten a death imminently expected if it is not done. They are both being stopped by professionals advising other professionals that the actuarial risk is too high to allow the precedent to be set. Isn't it up to them to prove that? Or do we allow people to die because of the actuarial risk associated with saving their lives? Well, I guess we do. That's why doctors can't get malpractice insurance. Even Lloyds of London wouldn't put odds on those guys.

The thalidomide mothers, by the way, were not the worst sufferers. The kids born with a finger instead of a forearm had it a bit tougher. One of the girls I met as a teen-ager seemed quite well adapted. I do *not* think there is any danger of that being repeated here, and if you would like I can ask her if she agrees with me on that. The comparisons seem a bit tenuous, if not humourous.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby griff » Thu May 05, 2011 7:16 am

1eye wrote: This is not a legal case. Except that of course, it is a legal case in a Human Rights Court in Canada. It should be a legal case if people start getting denied insurance coverage in large numbers because of their expedient diagnosis as 'MS' patients, which does not do so much for *them* but which classifies them with the expensive end of the industry. This should be a massive class action in that situation.



We got really carried away. Doctors are pretty much divided on the issue (and now I have put it nicely). Even vascular specialists are not convinced that the so called malformation of these veins are something that needs to be treated. We should listen to the arguments of both sides to get a proper understanding of the issue. Don't forget that legal actions can be taken if some one is unnecessarily treated and the treatment causes damage to his health.
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Re: Researchers/Reviewers with Tunnel Vision

Postby HappyPoet » Thu May 05, 2011 8:48 am

griff wrote:Hi Mark. I really like your posts as you seem to have a scientific approach to this whole thing. You have to also understand many of us who did not experience any improvements after the operation and we see lots of contradicting info everywhere.

You mentioned that dr Z clearly sees the complex nature of MS and CCSVI is only part of this. Early statements from him seem to me indicate something different, e.g.:

The researcher's theory is simple: that the underlying cause of MS is a condition he has dubbed “chronic cerebrospinal venous insufficiency.” If you tackle CCSVI by repairing the drainage problems from the brain, you can successfully treat, or better still prevent, the disease.


Hi griff,

Edit: Somehow this sentence did not make it into my first post: *I hope the above highlighted words show that the material you quoted is not a direct quote from Dr. Zamboni.

I gather you want patients to fully understand CCSVI. While your idea to educate is laudable, it is not a new idea on the forum. In fact, if you think you're having a hard time convincing people of your ideas about CCSVI treatment now, you should have been here last year when blossom and I were trying to do the same thing but were facing much more resistance. "You're late to the table," so to speak, but you're still very welcome at the table (no name-calling, please).

You see, when my first CCSVI procedure did not help all my neuro symptoms, I wanted others to know about my experience, and I still wanted to find help for myself. Thankfully, because of blossom, I found that help right here at TIMS-CCSVI. There's a thread about this help called CCSVI and CCVBP which was started by Dr. Flanagan, AKA uprightdoc, to discuss his theories and to help people suffering from neurological symptoms.

Important Links:
Email contact: uprightdoc@earthlink.com
"The Downside of Upright Posture" book: http://uprightdoc.com
Upright-health new website and blog: http://www.upright-health.com/
Alzheimer's, Parkinson's & MS old website: http://uprightdoctor.wordpress.com/

CCVBP = Chronic Cerebrocranial Venous Back Pressure, symptoms from which can be fixed/lessened with special Upper Cervical chiro treatment which addresses problems with the first two vertebra, the Atlas and Axis, and with the foramen magnum of the skull. The basic premise is that nerves, veins, and arteries become compressed/pinched when the skull does not properly sit on the first vertebra of the spinal column which can cause primary neuro symptoms, such as sensory and/or motor problems and secondary neuro symptoms, such as venous insufficiency (which, as we know from CCSVI theory, causes lesions) and CSF turbulence.

Many patients have been helped by Dr. Flanagan, and I bet he can help you, too: (1) He can help you find a qualified doctor, (2) He can answer your questions, and (3) He can look over your X-rays and MRIs. You might be surprised by what he finds! Thanks to my Atlas Orthogonal chiro treatments, I am able to walk again because the numbness in my feet has remitted.

Even if you can't remember being in an accident in your past, your neck could still have been injured without you remembering it or thinking much of it at the time. Even whiplash can cause serious, lifelong neurological symptoms. Plus, there are congenital conditions to consider, such as chiari malformations.

My advice is not to dismiss Dr. Flanagan's theories without first learning about them. Even cheerleader (Joan), Dr. Hubbard's wife, Arlene, and bestadmom (Michelle, Dr. S's 1st patient and strongest supporter) believe Dr. Flanagan can help people with neurological symptoms. I often give people Dr. Flanagan's link as I spread the messages of both CCSVI and CCVBP.

Please let me know what you think of Dr. Flanagan's work. :)
Last edited by HappyPoet on Thu May 05, 2011 9:50 am, edited 1 time in total.
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Postby bluesky63 » Thu May 05, 2011 9:38 am

Hi again, griff. :-) I think you may have missed my questions. They were sincere. Where in Europe are you? What is your native language? Where was that statement quoted from? If you do speak Italian, you can find the best direct meaning by going to the original language. So much gets lost in translation. :-)
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Postby willowford » Thu May 05, 2011 11:34 am

1eye wrote:The thalidomide mothers, by the way, were not the worst sufferers. The kids born with a finger instead of a forearm had it a bit tougher. One of the girls I met as a teen-ager seemed quite well adapted. I do *not* think there is any danger of that being repeated here, and if you would like I can ask her if she agrees with me on that. The comparisons seem a bit tenuous, if not humourous.


Who said there is a danger of that being repeated here? How on earth would anyone even be able to predict either way? They certainly couldn't at the time, otherwise they wouldn't have approved that drug.

Re-read the paragraph if you'd like to see why the example was actually brought up - the analogy was straight-forward but it had nothing to do with what you wrote above ie "risk of that happening here" - how to do with how quickly to introduce something into mainstream practice from a health policy maker perspective who needs to be doing a risk-benefit analysis with little data.

Still, I believe the point of this was missed completely. This has nothing to do with whether mothers (or whoever) "believes in ccsvi... so asking them is just ridiculous. CCSVI is NOT a new religious view based on faith and ideas - we can't just ask the ppl of the world what they "believe" about ccsvi and if the majority say they "believe in it" we establish it as standard of care! if that's how we determined which treatments are best - by popular opinion - we'd never discover anything!

CCSVI is a real "thing" out there that can be and is being studied as a potential cause, contributor or result of something - the details need to be studied empirically. We can't just walk around "asking" if they believe in.
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Re: Researchers/Reviewers with Tunnel Vision

Postby willowford » Thu May 05, 2011 11:51 am

MarkW, very interesting post. I have been thinking about all this.

MarkW wrote:You have omitted one key element in your senario, Willowford:

A literature review.

The anti CCSVI papers published recently fall into the same trap. The literature review demonstates that the methods used are applicable to produce the conclusions being published. Also conflicting data must be addressed if the paper is considered to be robust science.

The failings of a lot of current research against CCSVI is that it is based on a screening methodology rather than a definitive diagnosis method. One neuro led paper is diferent -
Yamout B, Herlopian A, Issa Z, Habib RH, Fawaz A, Salame J, et al. Extracranial venous stenosis is an unlikely cause of multiple sclerosis. Mult Scler 16(10): 1156–1172.
They used catheter venography (selective venography) and found extracranial venous stenoses (EVS) in pwMS. This paper adds to the data that pwMS have EVS.


The hypothetical paper did have a literature review (it's hypothetical so I just added it in :) But that STILL did not change the findings of their study! They can't publish different results just to match previous studies! What can they do???

(p.s. as a researcher, you already know that not all studies will be using the gold standard... that is the nature of science, looking at things from various lenses to see what we find; those studies are valid and publishable too)

If the anti CCSVI papers had reviewed the literature they would find this paper and others saying that selective venography is the gold standard for the diagnosis of EVS and CCSVI. Also that Doppler Sonography needs special training.

Some pro CCSVI researchers have also omitted a literature review in their papers. They have produced onclusions which focus on vascular explanations for MS, which are only part of the complex MS picture.


I'm so sorry. I am unclear and completely surprised that you would classify people as anti-"anatomical abnormality" for pro-"anatomical abnormality". And more importantly, how can someone decide to be anti- or pro- a certain anatomy before it has been studied in a large number of people to see how prevalent it is!

The day a scientist "decides" to get into a category of pro- or anti- "something" it means that they have already decided (a priori, before conducting the studies) whether something is or is not true. This has the risk of causing them to become less objective, and worse, to not publish findings that are contrary to their personal view.

I have said before, the worst thing scientists can do is allow their opinions to cloud their interpretation of data.


Prof Zamboni clearly sees CCSVI as part of the complex MS picture when he describes the multifactorial nature of MS. Calling CCSVI a syndrome is also important as syndromes are treated before the causes of the disease are understood.

So Willowford are you in the naysayer camp with Colin Rose et al ?? Are you prepared to look at all the evidence ?? That is why modern medicine attempts to be Evidence Based Medicine.

MarkW


Again, I'm truly astounded by the fact that I have to put myself into being anti or pro a particular anatomy. Are you pro-white matter lesion or anti-white matter lesion? In cancer, would you say you're pro-tumor or anti-tumor?
(what do the these things even mean?!!!)

Naysayer is the same idea! How can someone (a scientist!) be for or against something without sufficient evidence?!

Thankfully, some of those studying ccsvi do not have this anti- /pro- (evil/good) mentality - so we're likely to get somewhere in terms of answers.

Zivadinov who was chastised and demonized for publishing NUMBERS from his study (some were mad at him because his patients didn't have the anatomy to confirm what they wanted to believe) <-- he is part of the SAME group that has been leading further efforts in ccsvi research, despite his "evil" findings; he is now conducting treatment trials, looking into reasons to show if the iron deposition idea is at work here...etc. (what happened? I thought researchers can only be anti- or pro- ?! Why is this group actually being objective and looking for evidence before deciding which side they're on !?)

Everyone, PLEASE stop asking me if I'm pro or anti-ccsvi. My opinion or anyone else's is IRRELEVANT, unless we're the ones that created the body!

CCSVI a physical feature in some individuals. It's either present in most MS patients, or in some. The answer is out there in people's necks NOT in my brain or yours.

If anything, I'm anti-ccsvi in the sense that I wish no one had this venous abnormality (if you're pro- does that mean you are pro- people not getting sufficient venous drainage?!)
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Re: Science is a risk

Postby willowford » Thu May 05, 2011 11:56 am

MarkW wrote:I study MS as a scientific reviewer. Yes, I do risk it.
As a consequence I am critised by CCSVI naysayers and MS liberationists.

MarkW


Just out of curiosity, what's a scientific reviewer? (like, what do scientific reviewers do... we don't have that in Canada so I thought I'd ask what you do).

And how have you been targeted by the community? How did you deal with it?
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