A blow to revolutionary MS therapy

[cathyb]

Hey, OzC... I was wondering that very thing myself. Where is the mouse model/animal model? I heard that an organization (I think it was BNAC, but can't remember and don't want to start rumors) was working on such a thing, but that was months ago, we should have some kind of update, don't you think?[/code]

[sbr487]

I'm too sick to argue and ... you should never argue with idiots.
So my dear fellow MSers or better said CCSVIers, keep on getting liberated.
Instead of paying the insurance for expensive med. that doesn't work and damages your liver/kidney/etc, spend money and get liberated.
health to all,

If the same reflux isses was treatable with a pill these guys would be jumping "revolutionary" "path breaking" "nobel stuff" "we all know reflux is so bad for brain" ... don't take them seriously ...

[MarkW]

Below is an extract from a letter I have just sent to the Medical Director of the Oxford Hospitals, copying Neuros and IR Consultants.

I am aware of a Dutch media report concerning the Amsterdam VU Medical Centre study. Their website said that only 20 patients and 20 healthy controls were participating. The study used Magnetic Resonance Venography rather than the gold standard for diagnosis of CCSVI, which is Selective Venography (SV) as described by Hojnacki D et al. (In the csvi library for TIMSers). The small size of the study and diagnosis method, mean the Dutch work is worthless. For me, it is like saying: “we looked for a needle in the haystack by visual means but did not use a metal detector. Our conclusion is that there is no needle in the haystack.”

Attack is the best form of defence.................

MarkW

[Asher]

sbr487, they are not saying reflux isn't bad fot the brain; they are challenging the idea that there is such a thing as reflux in the first place.

[sbr487]

sbr487, they are not saying reflux isn't bad fot the brain; they are challenging the idea that there is such a thing as reflux in the first place.

Thanks, Asher. I forgot that they are saying blood flow is "normal" even with stenosis. What next? "normal" blood flow with 100% stenosis ... kind of wireless blood flow?

[1eye]

People who run this site: please make the before and after's sticky. And maybe omebody can massage the stickies into some kind of a FAQ? I realize how many actually have CCSVI so if there are not enough able body/brained available, I understand. It's getting daunting just to read the front pages. Something for everyone, right here on TiMS/CCSVI.

Maybe there should be a sticky about not believing everything you: see in a newspaper or press release, see in a press release about a journal publication, read in a peer-reviewed publication, hear on the radio, see on TV, or see on the Internet.

Maybe someone should compile a list of 'requirements for studies acceptable for serious consideration here', including relevance to CCSVI/Liberation/'MS'.

Special note should be made (somewhere that studies do not have to be taken seriously, and the management has no control over parody, irony, sarcasm, or satire of any kind; in fact, humour is always welcome and appreciated.

Or neither. Maybe I should go chill out somewhere.

[cheerleader]

OK---so I'm trying to find the actual PAPER that has the VU Amsterdam research, and there is none published yet. All I can find are a bunch of press releases that basically say Dr. Zamboni is a fraud, MS is not vascular and we have proven this.

Here's a lousy google translate segment from one of the press releases.

Worldwide are now several studies point to CCSVI. In Amsterdam twenty people with MS and twenty control subjects without MS a special focus on the blood vessels undergo MRI (magnetic resonance venography). In the analysis of MRI images is specifically given the presence of narrowing of the draining veins of the brains. Today, patients who participated in this study in a private meeting on the results. Shortly after this world are expertly made.

Now I know I said let's just dissect the message, not the messenger, but since they have released all this press WITHOUT a peer-reviewed medical paper published, I got nothin' else to google but their associations

I found it interesting that the doctors involved in these tests are also the ones that are working with Stanford on the beta interferon blood test-
http://www.ncbi.nlm.nih.gov/pubmed/20348925

And they also contributed to the Wrath of Khan piece (again, no research, just lots of opinion) in the Annals of Neurology
http://www3.interscience.wiley.com/jour ... 9/abstract

Due to these relationships, I find it hard to say that they are completely un-biased in their research. But, I have no paper to read.
cheer

[Vivianne766]

I'm too sick to argue and ... you should never argue with idiots.
So my dear fellow MSers or better said CCSVIers, keep on getting liberated.
Instead of paying the insurance for expensive med. that doesn't work and damages your liver/kidney/etc, spend money and get liberated.
health to all,

If the same reflux isses was treatable with a pill these guys would be jumping "revolutionary" "path breaking" "nobel stuff" "we all know reflux is so bad for brain" ... don't take them seriously ...

GOOD POINT.

[MrSuccess]

What say we stop giving unpublished critics the time of day .....

Until they actually perform exploratory [ and if they can ] CCSVI corrective procedures in the operating theatre on pwMS ..... they at best can only guess what actually is going on inside the body.

I further challenge those giving opinions based on text book surgery ..... to put your name on your work ....

As has our great Dr. Zamboni

Funny how those that see CCSVI in pwMS .... can and do take corrective steps to help ...... And want to do more .......and all they can.

And those who cannot correct CCSVI in pwMS ....are finding fault.


Funny how that works.


And to repeat myself for the benefit of those who missed it ..... it is VERY interesting that the German study only turned up ONE person with CCSVI.

They HAD to have one person labeled as having CCSVI or risk having their study dismissed as not having the ability or knowledge to detect CCSVI .

It's that simple.


So let's not give them anymore credit than they deserve.





..... when I walk in a room .....




Mr. Success

[1eye]

I was thinking about something that happened a long time ago...

It was the sixties. I was already officially a draft dodger. Not that I'd had to do much dodging. My one venture to my draft board, I had hitched to Toronto, and when I got there, I found I had no ID. I was incredulous that they wouldn't just give me forms to fill out, and wait to go through the doctors, shots, and whatever else, on another day. Didn't occur to them, I guess. No forms, nothing. I was 18.

I asked my Dad, why don't we all go down as a family and change over our citizenship? It only made sense, because we had been living in Canada over 10 years. My grandmother had moved in with us, and she had sold her house in Detroit. She was Canadian, and had an Ontario teacher's certificate from circa 1911.

We weren't likely to move back, especially after the Detroit riots, and anyway, Dad had given up, on the Lions or the Red Wings ever doing anything. I think he was a typical Canadian. Not only did he have the required long fuse, but I think he expected that having the home team win, in more than one sport, was obviously too much to expect. Probably thought we should just be grateful World War Two was over. After all, the Tigers had just won in '68. More would be fine, but he was not seriously expecting anything in this lifetime.

So there would seem to have been no reason to delay the family change we were planning, and become official Canucks right away.

In that era, there were student activist movements, student demonstrations, even student riots of various sorts. One was the demonstration on the Ambassador Bridge, which made the cover of Time magazine. We were protesting a planned hydrogen bomb test on the Aleutian island of Amchitka, which I assume is now no more.

It was a time of demonstrations. But the movement in question had its roots in a student newspaper. Then, it was the thing to do, to question anything to do with authority. My father, still having his American citizenship, became a target for people who did not want our Universities to have too much of what was seen then as suspicious, threatening, and an unwanted political influence -- Americanization.

They didn't know we were more leftwing than most Americans, and if he was likely to do anything like that, it would have been in the same direction they were complaining he was taking them away from. All my ingrained culture was saturated with Canadiana from all directions. I bet those students had never been to see Perth County Conspiracy, or heard Canadian poets in pubs. So why couldn't we just all go down and swear allegiance to Queen Elizabeth and be done with it?

The answer I may not have agreed with, but I was unprepared to argue with. I think I am still, though he has been gone these many years.

He said yes, we will, but not now. Not until this Americanism thing blows over. He had just been promoted to English Department head at the University. He said "I can't do it with a gun to my head."

I have no firsthand knowledge, but I suspect something like that is keeping Ms. Barb Farrel from venoplasty and Dr. Sclafani away from the table. I don't think there has been anything credible said against governments allowing this procedure especially for those out of choices other than death.

So it's up to administrators. The fires must be kept lit, but we are not aiming at them... yet. Time is of the essence of brain.

[patientx]

What say we stop giving unpublished critics the time of day .....

And to repeat myself for the benefit of those who missed it ..... it is VERY interesting that the German study only turned up ONE person with CCSVI.

Which study?

[mangio]

Where are their before and after liberation videos. Angioplasty
20 patients with MS and then tell the world it is of no value. It's becoming
clear that not all people with ms are helped by procedure but when it does work it seems to be of benefit for various symtoms.

I watched 3 videos today that are very encourageing and heartfelt.
P. M. is clearly walking much better. Someones pre and post video of
real eye problems that seem to be vastly improved.
Can you fake those types of improvements? Hmm...maybe just
a hoax.

[concerned]

I think that those type of improvements could be the result of the placebo effect. Hasn't their been MS treatments before where people experienced effects as such?

[mangio]

I don't believe in the case of the eye improvement video. Placebo of course is very powerful. Have you watched the youtubes?

[mangio]

youtube.com/user/mammananny#plu/7/lcHTdxa_hGQ
mammananny'sChannel

seems sincere to me