NEW: published in JVIR-expert panel findings on CCSVI

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

NEW: published in JVIR-expert panel findings on CCSVI

Postby cheerleader » Wed May 18, 2011 11:14 am

Published last week--consensus panel research paper


On October 18, 2010, the clinical trials division of the Society of Interventional Radiology (SIR) Foundation commissioned and convened a multidisciplinary meeting of physicians and scientists with expertise in clinical management of MS, basic sciences, neuroradiologic imaging, and vascular and venous interventions. The purpose of the meeting was to review the existing data linking CCSVI with MS and establish a research agenda for the evaluation of imaging and interventional therapies in the treatment of patients with MS.

Present at this meeting were Gary Siskin, MD, Ziv Haskal, MD, Gordon McLennan, MD
Michael Dake, MD, E. Mark Haacke, PhD, Sandy McDonald, MD, Walter Royal III, MD, Suresh Vedantham, MD, David Hubbard, MD, Salvatore Sclafani, MD, R. Torrance Andrews, MD and Heidi Sauder, PhD

Here is the full published paper from this meeting, which recommends treatment trials.
http://www.jvir.org/article/S1051-0443% ... 7/fulltext

EDIT: the TIMS program won't link addresses with parenthesis inside them, so simply copy the full address of the publication into your browser, and the paper will show up.
Last edited by cheerleader on Wed May 18, 2011 12:25 pm, edited 1 time in total.
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Postby AMcG » Wed May 18, 2011 11:50 am

Thanks Cheer. An excellent piece of news. But this bit made me laugh:

"blinding of the patients was feasible: it was believed that a sedated patient undergoing venography would not, with certainty, know whether venoplasty was being performed concurrently."

As many people have also reported I could feel it every time they did it.
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This is a must read for all forum users.

Postby MarkW » Wed May 18, 2011 12:20 pm

This is a must read, thanks for posting Cheer. Your link needs a small change. I suggest most people use the link below to the pdf and save the file. It will take a few reads to adsorb it.

http://download.journals.elsevierhealth ... 007597.pdf

Interesting thought AMcG, I could feel the balloon inflation as well. I challenge the need to sedate patients (extra drug usage) just to attempt to blind patients...........not ethical.

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 Cece » Wed May 18, 2011 12:34 pm

this was of interest:
There was near-universal agreement that randomized trials would be required to confirm the role of venous interventions in MS. However, it was equally clear from the discussion that several factors could be better understood before large-scale randomized trials are initiated. Among these are the aforementioned confirmatory prevalence and diagnosis data, but also the need to define the appropriate study population, the need to optimize the interventional techniques for diagnosis and treatment, and to agree on appropriate endpoints for primary and secondary endpoint analysis. The panel, therefore, encourages the performance of investigator-initiated single-center and multicenter studies so safety and outcome data can be reported. In this way, a foundation of knowledge in these areas can be gathered. This knowledge will help provide the information necessary to appropriately power a prospective randomized trial.
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Bad Idea ... lets ignore MS and focus on circulation

Postby MarkW » Wed May 18, 2011 12:59 pm

I hope people read this thread rather than:

Idea ... lets ignore MS and focus on circulation.

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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Interesting - Experts Do Not Know

Postby MarkW » Wed May 18, 2011 1:02 pm

I agree Cece it is interesting - these experts do not have sufficient knowledge to design and start a definitive clinical trial yet.

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 1eye » Wed May 18, 2011 1:29 pm

I personally think what is needed is an accurate description of symptoms associated with CCSVI. They may or may not coincide with symptoms felt to be caused by MS. What we need is a fairly reliable assessment of the say 5 symptoms most likely to be completely or mostly gone after venoplasty. Never mind the clinical name. Just name it. My top 2 are cog fog and loss of bladder control. After that, stamina. After that, fine motor control. After that, breath control. There's others, but those are my top 5.

1. Bladder
2. Cognition
3. Stamina
4. Fine Motor
5. Breath
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'MS' is over - if you want it
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Postby Cece » Wed May 18, 2011 3:37 pm

1. Cogfog
2. Poor sleep quality
3. Fatigue
4. Vision
5. Saturation of colors
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Re: This is a must read for all forum users.

Postby codefellow » Wed May 18, 2011 3:49 pm

MarkW wrote: I challenge the need to sedate patients (extra drug usage) just to attempt to blind patients...........not ethical.

MarkW


If patient gives informed consent for blinding and extra drug usage and knows he/she may not get actual treatment, where is the ethical breach?
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Postby cheerleader » Wed May 18, 2011 5:52 pm

It doesn't really matter what we think about the treatment trials. There are sham brain surgery procedures for Parkinsons. This is the way it is done today. We can debate it, but it won't change the reality.
link

The important and relevent thing I hope people take away from this post is that there are many doctors, across disciplines, who are meeting and determining a future protocol for clinical trials for angioplasty in CCSVI. They are publishing in a major journal (JVIR) and they are addressing an international audience.
Just trying to keep the scientific posts on the CCSVI thread,
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Re: This is a must read for all forum users.

Postby Cece » Wed May 18, 2011 6:57 pm

codefellow wrote:
MarkW wrote: I challenge the need to sedate patients (extra drug usage) just to attempt to blind patients...........not ethical.

MarkW


If patient gives informed consent for blinding and extra drug usage and knows he/she may not get actual treatment, where is the ethical breach?

There's a risk taken with no benefit to the patient.
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Re: This is a must read for all forum users.

Postby drsclafani » Wed May 18, 2011 10:27 pm

Cece wrote:
codefellow wrote:
MarkW wrote: I challenge the need to sedate patients (extra drug usage) just to attempt to blind patients...........not ethical.

MarkW


If patient gives informed consent for blinding and extra drug usage and knows he/she may not get actual treatment, where is the ethical breach?

There's a risk taken with no benefit to the patient.


cece
there must be no coercion, patients must be treated with dignity and privacy, and they must be appraised of the risks

Patients do not have to choose to be a trial patient.
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Re: This is a must read for all forum users.

Postby frodo » Thu May 19, 2011 12:14 am

Cece wrote:
codefellow wrote:
MarkW wrote: I challenge the need to sedate patients (extra drug usage) just to attempt to blind patients...........not ethical.

MarkW


If patient gives informed consent for blinding and extra drug usage and knows he/she may not get actual treatment, where is the ethical breach?

There's a risk taken with no benefit to the patient.


The consequences of angioplasty for CCSVI are currently under research and therefore unknown. In the end, maybe the real procedure is worse that the sham one. That's why the procedure can be considered completely ethical.
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Re: NEW: published in JVIR-expert panel findings on CCSVI

Postby NHE » Thu May 19, 2011 12:28 am

cheerleader wrote:EDIT: the TIMS program won't link addresses with parenthesis inside them, so simply copy the full address of the publication into your browser, and the paper will show up.


The URL is now fixed. Please see this post in the Forums FAQ thread.

post139024.html#p139024

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Re: This is a must read for all forum users.

Postby 1eye » Thu May 19, 2011 8:44 am

drsclafani wrote:
Cece wrote:
codefellow wrote:
MarkW wrote: I challenge the need to sedate patients (extra drug usage) just to attempt to blind patients...........not ethical.

MarkW


If patient gives informed consent for blinding and extra drug usage and knows he/she may not get actual treatment, where is the ethical breach?

There's a risk taken with no benefit to the patient.


cece
there must be no coercion, patients must be treated with dignity and privacy, and they must be appraised of the risks

Patients do not have to choose to be a trial patient.


This one is one I know something about. There is an unspoken coercion by the implication that the trial is the only hope you have. That is emphasized, I believe, unethically, when it is given last as a treatment option. I think denial of treatments that have worked in the past to patients who plead for them, regardless of the doctor's expectation of them working, is unethical, and is used unethically as part of the coercion to trials which are much more interesting to the doctor than to the patient. I was swayed by the last argument, that I did not have to do anything. I was interested in the result. Like the doctor, I was just plain curious. What a situation to be in!
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