MS Society eNews and CCSVI

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

Postby Sharon » Mon Nov 16, 2009 8:31 am

Thomas posted this article over in the "General Forum" - it is a good read
A possible explanation why wrong/unproven theories are used in medicine:
Quote:
Although the classical ideal is that scientific theories are evaluated by a careful teasing-out of their internal logic and external implications, and checking whether these deductions and predictions are in-line-with old and new observations; the fact that so many vague, dumb or incoherent scientific theories are apparently believed by so many scientists for so many years is suggestive that this ideal does not necessarily reflect real world practice.

In the real world it looks more like most scientists are quite willing to pursue wrong ideas for so long as they are rewarded with a better chance of achieving more grants, publications and status.

The classic account has it that bogus theories should readily be demolished by sceptical (or jealous) competitor scientists. However, in practice even the most conclusive ‘hatchet jobs’ may fail to kill, or even weaken, phoney hypotheses when they are backed-up with sufficient economic muscle in the form of lavish and sustained funding. And when a branch of science based on phoney theories serves a useful but non-scientific purpose, it may be kept-going indefinitely by continuous transfusions of cash from those whose interests it serves. If this happens, real science expires and a ‘zombie science’ evolves.



From: http://tr.im/F23P
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Postby zap » Mon Nov 16, 2009 8:41 am

Huh, my former boss's mother-in-law has MS and I have been keeping him in the loop of the CCSVI paradigm ... today he emailed to ask how it was going, if I was still having the surgery, etc - it seems that his father in law (who takes care of his quite handicapped wife) was pretty dismissive of CCSVI - until he read about it last week in the MS Society newsletter ... although the way they carefully dismissed it also took root ... here's what he'd emailed to my ex-boss:

Have you heard how Gabe did with the venous procedure he had done in CA? The MS society just did a news piece on this idea based on recent info by Italian doc. The article said this basic idea had been looked at before and had not been able to be connected as a cause of MS.


I sent him back this:

Yes, on Dec 7th I'll have my veins scanned - if blockages are found, I'll get stents implanted the following day.

While the new research is similar to previous efforts to investigate the venous return system, the difference is in the new imaging technology we have now - before, we had good theoretical reasons to think that venous backflow might have been the culprit (ie "Dawson's Fingers" lesion patterns), but no means to show it - today with the newest doppler and MRV scanning, we can actually see flow disturbances and vein blockages ...

Every MS patient is presenting somewhat differently, but everyone tested so far has /some/ kind of blockage to their veins ... for example, here is one MS patient's recent MRV scan:

http://i221.photobucket.com/albums/dd69 ... /oneee.jpg

- note that he has only one jugular vein (the bright white thing on the left) - and that one is blocked in two places (the dark spots at around the jawline and collarbone levels) ...

Here's a recent news report that is a little less biased than the MS Society's newsletter (they get an incredible amount of funding from Big Pharma (which is going to be out of billions in profits in useless MS drugs if this paradigm shift takes place): http://www.buffalo.edu/news/10562

And a couple good resources from which you can get to all the major research and news:

http://csvi-ms.net/en
http://www.thisisms.com/forum-40.html

Hope you're well, wish me luck!

Gabe

PS - Something short of surgery that some MS patients have found helpful is raising the head of their beds up several inches (with books or boards) - this lets more of the blood drain through the same channels as are used when we're standing (the jugular veins take the load when we lie flat, and if these are blocked, sleep is a rough time for the brain).

Interestingly, my GF's best friend's mom has MS and for years now she has only slept in a recliner ... she had no idea WHY it helped (or why laying flat made her feel awful), but it did ... and now we have an idea of why!
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Postby bestadmom » Mon Nov 16, 2009 11:28 am

Zap,

I've been telling my mother about CCSVI since May. She thought it was crazy. When she got the email last week fromt he NMSS, she sent it to me. Surprise!!

Now she wants to tell everyone she knows about it.

Oy
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Postby cheerleader » Tue Nov 17, 2009 9:17 am

This is from the revimmune forum regarding clinical trials-

Michelle believes she is the last patient accepted into the second of Johns Hopkins clinical trials, and it may be the last. Dr. Kaplin says that although the first two trials were exceedingly promising, and no side effects were reported, outside of the usual reactions associated with Chemotherapy, there may be no more opportunity to test what could prove to be the cure for MS and other autoimmune disorders. “We need to do a randomized clinical trial, a much larger trial ,between 150 and 300 patients. It’s a very expensive process. We need 15 million dollars to get this done.”

Without the trial, there can be no FDA approval, and insurance companies will not cover the cost of the treatment. “We have gone to three different pharmaceutical companies and we have showed them the data, and asked them if they would be willing to get involved in this. We’ve had the same response from all of them. They all said it’s an amazing treatment, we have seen nothing like it, this might one day lead to a cure for MS, if we could refine it. They say its fabulous, but we don’t think we could recoup our investment, so it’s not for us.”

The problem Dr. Kaplin explains, is the drugs used in combination in this new treatment are decades old, cheap, and the patents have expired. This means, it is difficult for pharmaceutical companies to make a profit.

Johns Hopkins has started a grass roots campaign to try to raise the money.


I know Mel (who had bilateral jugular vein occlusions corrected at Stanford after having revimmune a year ago) is better able to address the fabulous claims of revimmune, that's not why I've brought this over here, don't want to debate revimmune- really!
but the reason I wanted to share this particular article is 3 things:

1. A randomized clinical trial is essential for FDA approval and insurance
2. A clinical trial will take scads of money
3. It will not come from pharma

The who/what/where/how of the clinical trial is best figured out by the docs, and I know they will figure out a humane and safe trial.

The one bright spot in all of this is that it will be possible to get stent companies and interventional radiological technology manufacturers to give up some cash...but my heart tells me this is going to take some major grass roots fund raising.

Armed with research papers, press and media clippings and dvds, I'm planning on hitting the streets next week in search of moola. It's time for the dog and pony powerpoint show. I'm also asking friends and family to save their Christmas dollars on our family, and send it to the Holly fund at Stanford. Remembering Holly at Christmas, seems a good thing.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ozarkcanoer » Tue Nov 17, 2009 10:12 am

cheer... This BIG IDEA and this message board have given me so much hope. I cannot tell you how I suffer from my MS. I am vigorously campaigning in St Louis with the Hope Center for Neurological Disorders and the nonprofit who does their fundraising: Hope Happens (Google it). I have relayed your very thoughtful posts to Matthew Stowe, the Administrative Director of the Hope Center and to the development people at Hope Happens. I will do anything I can to get the attention of the Washington University School of Medicine to be receptive to CCSVI.

My husband and I have approached The Hope Center and Hope Happens to make a $10,000 donation to Hope Happens (who funds research for the Hope Center) in order to bring the doppler sonography to St. Louis. We just made this offer yesterday. I know this is not much money in the big scheme of things, but the Danforth Foundation has a 10 million dollar challenge grant for Hope Happens... so I hope that my $10,000 will be actually $20,000 !!

Matthew Stowe asked me to make a list of the BIG NAMES (i.e. important people) in CCSVI in order to attract attention. BIG NAMES talk almost as well as money. If you would review my thread on the BIG NAMES, I would appreciate it.

Anything else that I CAN do, I will do.

sincerely,

Ozark
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Postby ozarkcanoer » Tue Nov 17, 2009 10:48 am

cheer... For the past several years our family has donated money to charity as Christmas presents. Like the Cancer Society, NMSS, Salvation Army, etc. etc. This year I plan to ask "Santa Claus" to send money to "Hope Happens" targeted specifically for bringing the CCSVI procedures and ideas to St. Louis.
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Postby mrhodes40 » Tue Nov 17, 2009 4:19 pm

How sad about the trial situation, but it seems surprising to me....

The Revimmune forum talks about insurance covering and medicare paying for some procedures. (Isn't Chris on MC?)

At any rate, way to go on a PPt dog and pony show! That should help! I hope there is a lot of support and sufficient funds are raised. Once again we all owe you a debt of gratitude Cheer for stepping up to the plate, picking up the bat and squaring your body to knock it out........... 8)
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Arcee » Tue Nov 17, 2009 10:47 pm

Joan, you have some really amazing dogs and ponies to share with the world. I do hope you feel the gratitude that flows back to you.

As for non-pharma sources of funding, time to formally approach the stent-makers?
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Re: MS Society eNews and CCSVI

Postby NHE » Wed Nov 18, 2009 3:07 am

Cheerleader wrote:The one bright spot in all of this is that it will be possible to get stent companies and interventional radiological technology manufacturers to give up some cash...but my heart tells me this is going to take some major grass roots fund raising.


I just did a quick calculation. It was reported on the forum by at least one member that their insurance company was getting billed around $10,000 per stent. If one takes 400,000 as the number of MS patients in the US and if each MS patient needs between 1 to 2 stents each for an average of 1.5, then that's a $6 billion market just for the stent hardware just here in the US. Note that my numbers may be off, but there's certainly a profit motive here.

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Postby javaneen » Thu Nov 19, 2009 1:16 pm

Every year I participate in the MS walk in April with all my friends and family. Together we raise a good amount of money for the NMSS. This year I am thinking of asking my friends and family to donate either to the fund at Stanford, Jacobs or Haacke's. I am planning on getting some sort of website up to allow my friends and family to review a little about each fund and chose one to make a donation (I may just choose one to put on the site but I haven't researched them enought to decide which one). Then instead of walking at the MS walk I was thinking of putting flyers on peoples cars about CCSVI. I am going to talk it over with my northeast team to see what they all think as the time gets closer. As Cheer says...we need a good grassroots effort plan of action in place. This is what I am thinking....every year thousands of people with MS come together all across the country to support the fight against MS...well we can all come together somehow to support the fight against CCSVI. Any help and/or suggests welcome.
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Postby CNClear » Sun Nov 22, 2009 3:34 pm

One of the biggest pharma companies owns some of the biggest companies that make stents AND companies that make MS drugs...wonder how much of a dilema it will be for them?

Lisa, aka, CNClear
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Postby daniel » Sun Nov 22, 2009 6:20 pm

CNClear wrote:One of the biggest pharma companies owns some of the biggest companies that make stents AND companies that make MS drugs...wonder how much of a dilema it will be for them?

Lisa, aka, CNClear


Not much of a dilemma from a business perspective, I'm pretty sure they make much more profit selling $2000/month drugs than $500/procedure stents....
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Postby bestadmom » Sun Nov 22, 2009 6:24 pm

Which companies that make ms drugs also make stents?

The stent mfgs I know of are Abbot, Boston Scientific, Cordis (div of
Johnson & Johnson) and Medtronics.
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Postby ozarkcanoer » Sun Nov 22, 2009 6:28 pm

Speaking of the NMSS... There is now a sticky called "CCSVI Video and NMSS Article" on the main MSWORLD message board. I didn't make this sticky. Only a board moderator is allowed to do this. beckyr, an MSWorld Webmaster/Tech Support/Moderator, made this sticky !!!!
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Postby bestadmom » Sun Nov 22, 2009 6:30 pm

I saw that, but still no one over there is talking about it in a meaningful way. Someone emailed me today from my addy in my profile about it.

It's a tough forum to have a back and forth, since evry post is moderated, and without pm's it's the worst.
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