This Is MS Multiple Sclerosis Community: Knowledge & Support

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.

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

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.

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

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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

this was of interest:

I hope people read this thread rather than:

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

MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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

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

MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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

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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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

1. Cogfog
2. Poor sleep quality
3. Fatigue
4. Vision
5. Saturation of colors

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?

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,
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

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.

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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You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info

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

post139024.html#p139024

NHE

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!

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience