Consortium Comments re: CCSVI

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

Biogen might pay

Postby mohzi » Tue Dec 01, 2009 4:38 pm

I would hope someone like Biogen would step up and fund a large worldwide trial. Like I said, I would hope. They are either laughing right know are say "OH #$%@."
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The voice of reason...

Postby Hope66 » Tue Dec 01, 2009 5:02 pm

Lyon wrote:
CureIous wrote:I'm still in a conundrum oh how they will ever "prove" with any reasonable assertion that any improvements aren't the repeated-until-I-want-to-puke "placebo effect".
Like anything else, the best you can do is the best you can do.

Despite all the naysaying about it not being possible to set up a conclusive CCSVI clinical trial, if CCSVI is what it's touted to be, the cream will rise to the top. If it, like the crabs, has a hard time distinguishing itself from placebo effect it won't be a big loss if it sinks and is never heard of again.

Although time is precious, in any MS trial time is the proof. If in a CCSVI clinical trial the difference after treatment is as profound as people are representing, in a large number of treated people it should soon begin to become obvious that NO ONE is having relapses and NO ONE is having enhancing lesions and NO ONE is experiencing increase of and/or new symptoms. In that same light, any kind of profound difference is going to be obvious. If the differences aren't profound then CCSVI has been misrepresented and it will be a bad scene.

To be honest, I'm pretty impressed with the fact that, what seem to be a pretty large number of thisisms members who have been treated, I haven't heard of anyone mention any kind of progression to date.



Thanks for posting this Lyon. I know that there are lots of us out there who want a solution NOW, but wishing it is not going to make it happen.

It WILL take time. That sucks, but it's the reasonable, rational, best bet we have.

Personally, I want to be tested now and if CCSVI is found, I would want it fixed yesterday. (I should add that I secretly hope that testing will show that I do not have CCSVI and therefore not actually have MS...yes I know I'm "wishing" several steps ahead of the game, but...hey we all have our fantasies ;)

Anyway...thanks again for posting. I think that we're in for a turbulent time and I welcome the voice of reason always.

Cheers,
Hope
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Dx March 2003
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Pathology of MS/Blood Vessels

Postby Shayk » Wed Dec 02, 2009 7:01 pm

Just to add another comment about the CMSC statement:

could MS be caused, or at least accompanied by narrowing or blockage of the veins that drain the brain and spinal cord?

Ok, so none of the 50 years of research in MS so far have suggested this.......Pathological studies of MS patients have never suggested this.

Really?? Iron Deposits Surrounding MS Plaques

Autopsy samples from cerebral areas of five brains from patients with multiple sclerosis (MS) and from six control brains .....

Positive iron reactions were observed only in MS sections surrounding demyelinated plaques.

Myelinated white matter near the lesion contained numerous iron-laden ovoid bodied and axons that stained positively for iron.

Positive reactions were also found within blood vessels of gray matter near the lesion.

A possible source of the iron was extravasated blood.

I think this is a pathological study and I'm confident Cheer or someone has posted it previously. I had to look up "extravasated blood"--the noun BLOOD EXTRAVASATION has 1 sense:
1. the leakage of blood from a vessel into tissues surrounding it

It seems to me that blood leaking into brain tissue might be a possible indicator of potential drainage problems, but then again, maybe not. I found the autopsy info interesting in and of itself. It's not research on mice--which some MS experts clearly prefer.

Take care all

Sharon
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Postby Johnson » Wed Dec 02, 2009 9:53 pm

It's not research on mice--which some MS experts clearly prefer.


Touche!
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Postby frodo » Thu Dec 03, 2009 5:22 am

zipfed wrote:I dont post very much but I am going to start by saying that I have read a lot of negitive things from doctors as there first responce to anything new, now Dr. Alex wasent real negitive but I would not take what he said as positive either, and I am tired of these doctors and researchers with a wait and see attitude I mean come on this disease was first documented 171 years ago and our best treatment is to surpress our immune systems. How about the fact that they keep studing EAE in mice when it is known that EAE is not a good model for MS! here is a good idea Dr. Alex and every other doctor in the world until you get off you ass and come up with something yourself sit down and shut up! to bad they all couldent have MS then possible something would get done.

Sorry for the rant but I am just getting more and more pissed by the day and I have only been putting up with this for a year.


It seems that there are doctors that even seeing an stenosis in our veins say "It is better to wait because we don't know for sure what will happen if we open them".

I would propose those doctors to block their yugulars. Anyway it is not proof beyond doubt that something bad will happen.

For sure they would say "no, I prefer to keep my jugulars open, even if I am not sure about the consequences".

Absolutely inmoral.
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