This Is MS Multiple Sclerosis Knowledge & Support Community

Johnson wrote:It is too bad that the reporting tapers off.

I have been meaning to suggest if we created a couple new threads ('six months later CCSVI tracking thread' and 'one year later CCSVI tracking thread,' perhaps?) maybe it would encourage updates all in one place.

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cheerleader wrote: There is nothing personal here. It is just fact.
cheer

Very selectively chosen facts.

rainer wrote:

cheerleader wrote: There is nothing personal here. It is just fact.
cheer

Very selectively chosen facts.

What the flip??
It's a thread on Dr. Mark Freedman in the CCSVI forum. Not a lot of fans, since he called venous studies a "hoax." I linked to 3 papers he co-authored, regarding the failure in the first part of his study. (He got 4 million for this study from the Canadian MS Society) He found out that in progressive (SP and PP) patients there was continued demyelination, neurodegeneration, and brain atrophy (10x faster than normal.) Which is why he is only using this protocol now on those in the refractory, inflammatory stage of the disease. Those are facts.
hi rainer-
cheer

cheerleader wrote:

rainer wrote:

cheerleader wrote: There is nothing personal here. It is just fact.
cheer

Very selectively chosen facts.

What the flip??
It's a thread on Dr. Mark Freedman in the CCSVI forum. Not a lot of fans, since he called venous studies a "hoax." I linked to 3 papers he co-authored, regarding the failure in the first part of his study. (He got 4 million for this study from the Canadian MS Society) He found out that in progressive (SP and PP) patients there was continued demyelination, neurodegeneration, and brain atrophy (10x faster than normal.) Which is why he is only using this protocol now on those in the refractory, inflammatory stage of the disease. Those are facts.
hi rainer-
cheer

Hi Cheer. I find it disconcerting that you are allowing an axe to grind with Freeman's dismissive language to portray the science of ASCT in a negative light. I don't believe you would treat negative evidence about CCSVI in remotely the same way. I don't believe you would readily hold it up with no questioning of motive, content, or context.

You are also presenting this evidence to an audience ready to lap it up. It strikes me as dangerous and not promoting healthy debate. But perhaps that is not what this subforum is for. Which is a shame because it seems to frequently devolve into destructive and unproductive "us vs. them" stances.

And in fairness of not selectively presenting evidence: you've contributed a ton to this board which is great. That CCSVI has gotten so much attention is also great. That outside the box thinking is getting attention is even more greatness. But its like they told Spiderman, with great power comes great responsibility.

I found the 10x higher brain atrophy quite disturbing. Thank you to both sides here for linking to some interesting reading.

Lyon wrote:She was tested at Buffalo but they wouldn't give us the results, so we aren't aware of her venous obstruction status. I work at Michigan State University and have been in touch with radiology, who have been in touch with Haacke. Not to stir things up but they are working with the IRB right now.

I just made a post-it of this...Michigan State in IRB...it is fantastic to hear of every new study. What I really would've hated is if this lingered around unstudied. I think we're going to get a lot of similar studies all at the same time, so if they end up being in any sort of agreement about the results, positive or negative towards ccsvi, we'll at least know. And I think it has been patient activism that lit the fire...I do not think it can be said too often, well done, everyone involved.

Lyon wrote:so the stories of people treated for Leukemia never experiencing further progression from MS were admittedly interesting

that does sound interesting...I'd want to know how long 'never' is...

Lyon wrote:Research involves comparison and I think the reason nothing specific to MS has ever been identified is that we in the developed world all have "it". Comparing apples to apples isn't an effective way of identifying something different.

I have to take issue with the idea that all people in the developed world have this...I have some very healthy friends and if they do, I want what they have...but I do wonder: there are white matter lesions more commonly found on MRIs once you hit the age sixty, I believe it was; by no means the majority but something in the 6-10% range, and none of this should be taken as a firm statistic. Now knowing the CCSVI theory and the fact that veins weaken with age, I'd want to take an IVUS look into their jugulars. If I had an IVUS. And the medical background to go with it.

Cheer, You are right on the money about Dr F. facts where the reason I do is because I'm a patient of his. I had asked him to try the immune reboot but he refused because of my SPMS type. But he did not hesitate to put me on a 2 yr chemo Mito nighmare.
He is a great scientist with very poor patients human relationship and with a touch of arrogance. For these reasons I quit seeing him this last winter.

I'm betting all my hopes on ccsvi after all what else is there.


Thank you all

Norm

NormB wrote:Cheer, You are right on the money about Dr F. facts where the reason I do is because I'm a patient of his. I had asked him to try the immune reboot but he refused because of my SPMS type. But he did not hesitate to put me on a 2 yr chemo Mito nighmare.
He is a great scientist with very poor patients human relationship and with a touch of arrogance. For these reasons I quit seeing him this last winter.

I'm betting all my hopes on ccsvi after all what else is there.


Thank you all

Norm

Norm--
I'm really sorry for your situation. really.
I'm not rooting against anyone because I need to be right, I just want patients to get real help... I hope this new viewpoint sheds some light on MS, and offers some relief for you. I know it's early and we don't have all the answers, but getting some fresh insight into this disease can only help.
hang in there-
cheer

That I follow the stem cell route, shutting down my entire immune system and rebooting it versus just trying the Liberation treatment.

Quite frankly Freedman should go to jail and I hope he does with a bunch of the rest of the Holier than though Neuros.

I have never ever met such a weird bunch of people than the three neuros I have seen over the last few years.

They are just weird people and they have been lost in the trees for decades and decades.

The MS socieites were set up by them as a means of raising money to search for bugs in our brains.

The Blood flow problems have been around for years and years but ignored by the MS societies.

In fact the CTV story I am told to believe came as a result of MSS of Canada rebuking Ashton Emburie's call for an investigation.

And now they have the nerve to ask for 10 million dollars. THEY ARE CRIMINALS and will go to jail.

Ironic Dr F has a press release same time as CCSVI protests in Canada. Wants to keep his research budget. Thanks for info on failure rate for SMPS on the stem cell thing.

Rainer - As disapointing as you may find it .... Cheerleader has presented some FACTS regarding Freemans research.

I do not like to read long winded posts here on TIMS. Should I desire more detail .... I can do the homework myself. I do like short factual posts ...highlighting the areas of attention.

This is what Cheerleader presents .

In tennis terms .... not only has Cheerleader volley'd the ball back into Freemans court ....she has aced the SOB .

Maybe Bob can help you and Freeman go find it ?



Happy Mothersday in advance JB .





Mr. Success ............... smiling like a butchers dog ......

Gordon,

In defense of neuros : my neuro is a fence sitter on CCSVI. However he presented CCSVI among other things after this last AAN meeting. His presentation was not positive or negative. He knows I am interesting in CCSVI because I have emailed him mucho emails about it. He knows I am going to BNAC for testing. He is not arrogant and he truly cares for his patients. He does MS drug clinical trials and spent years at NIH. Plus I LIKE HIM. I hate to see all neuros presented with a negative slant. I have had bad experiences with doctors who are NOT neuros. Every doctor is an individual. With Dr F, his words reveal his arrogance. So we must not show prejudice to a whole profession because of a few. Just think : Dr Salvi, Dr Zivadinov and Dr Weinstock-Guttman are all neuros !!!

ozarkcanoer

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NormB wrote:Cheer, You are right on the money about Dr F. facts where the reason I do is because I'm a patient of his. I had asked him to try the immune reboot but he refused because of my SPMS type. But he did not hesitate to put me on a 2 yr chemo Mito nighmare.
He is a great scientist with very poor patients human relationship and with a touch of arrogance. For these reasons I quit seeing him this last winter.

I'm betting all my hopes on ccsvi after all what else is there.


Thank you all

Norm

I totally agree with you! I actually saw my doctor here, in Winnipeg yesterday, Dr. Cossoy. His remarks were (to paraphrase) that the CCSVI theory need sto be vigorously tested and properly, which I guess he has to say that, right? And also, that he really doesn't agree with the theory, etc. But he did say that five years ago he thought that the suggestion that MS patients and everyone take vitaminD was rather pointless, but that now he can see the reasons for taking vitamin D, so that he is admitting ha has been wrong about certain issues in the past, thought one thing then did a reversal, bla bla bla. I remarked that as a patient, I am desperate and that I need to, want my veins checked and if blocked angioplasty performed.
Then I did mention the footage and testimonials of patients who have had the angioplasty performed and their improvements, some who have greatly improved ...his response-a prepared one, the placebo effect.
The point is his answers were prepared, as if he has to say this, his job too.
So a dead end for me, fr now ... I just hope the proving of this theory doesn't take too long, I'm 33 and I've lost 15 years. It's enough.

Oh, and Freedman should be fired. Hopefully that will happen shortly.