This Is MS Multiple Sclerosis Knowledge & Support Community

even though this is getting off topic, other good d3 authors include vieth and hollick, just to name a couple..

I think this article is just perfect. It is not a scientific description of CCSVI and never meant to be, I think. It is a bit of a rant, but much more it is a call to action. It all leads to the point were the link is placed.

And that IS a crucial point. “I am as mad as hell and I am not going to take this anymore”... There was this historical event when patients and caregivers FORCED the US and canadian MS societies to fund research of CCSVI. As far as I know, this has never happened before, nowhere!

But it must not stop there. We have to be persistent in this struggle and just go on with it. As Dr. Zivadinov says, the Buffalo study is but the first step. If we stop demanding FAST research, well, they will pretty much stop going on, or at least it will be delayed. It really would be an unbearable state if CCSVI would be proven to be a condition linked to MS, but with no approved treatment for years. I think we have to make clear that we will not be satisfied with "Just take your CRABs a couple of years more until we finally come to the decision that we will eventually ask the FDA (or whoever is in charge) to approve the treatment."

One more thing. There are still enough PwMS out there who have no clue about CCSVI (Perhaps not in Canada, that is. ;) ): The ones without internet. We still have to spread the word and if a journalist, scientific or not, finds some clear words for it, that's a good thing.

I think this article is just perfect. It is not a scientific description of CCSVI and never meant to be, I think. It is a bit of a rant, but much more it is a call to action.

I am with cah. I am one of the 60 refered to in the article and I want all of you to feel the relief and healing I am feeling! Let's keep pushing!

Remember that the scenario we are currently facing is not an ordinary one.
One one hand we have groups saying that this is fraudulent, not proven, need to do more research, trials etc, but the fact remains that none of this is lucrative to people who have money and can do research. Generally natural competition and deep pockets of pharma companies is enough to ensure that such research is taken to logical conclusion without any of us really getting involved. But look at the situation we are in, the MS societies which MS patients invested over the years hardly knew about CCSVI or knew but did not care to follow up or deliberately tried to downplay keeping their own agenda in mind.
Patients trying to fund clinical trials, patients trying to educate the doctors, patients feeding the media ... this is the situation we are in ... tells a lot about the ethics of our current day researchers/doctors, the wisdom of policy makers and the media, whose role as a watchgod is just a lip service ... welcome to a safer and healthier 21 century ...

As far as the Vitamin D comment -- A. Embry has been one of the outspoken advocates for the use of vitamin D not only for MS but for other diseases. It has only been in the past two years that the medical community has finally started testing for vitamin D levels - again, Embry was ahead of the group.

I think the last sentence is a bit of an over-statement. Margherita Cantorna, PhD, Hector DeLuca, PhD and others have been researching, doing lab experiments and publishing about vitamin D in relation to MS, IBD and other diseases since at least the late '90s.

when i first started looking at the time frame for research connecting d3 and the immune system i found a body of research going back 30 years, and that was a few years ago. off topic, i know i know!

I did not know that dr. Embry was the person who raised the matter with W5. We should be greatful to him forever. The W5 documentary really made a difference in getting CCSVI out there.

His first article was also great. Every single sentence made sense, resonated in my head. I read it over and over. The problem is now that this raises the expectations.

In his new article he is right about the anger and frustration with the patients, having to fight for their own health, having to fight against the disbelieve and contempt of at least parts of the medical sector, having to organise everything themselves, having to convince insurance companies etc etc. And with almost no help of this huge MS ecosystem out there... It is disgusting, shame on all. Here Embry is right.

But I think he goes wrong when talking about the research, the Buffalo tests etc. Here he is mistaken and perhaps falls a bit in his own research trap. In fact I think the paradigm shift is already there; people are or will get treated across the world soon. There is a thread on this forum that describes this (Treatment center can be found - get working).

I am from Europe and believe that the liberation treatment will become common place soon here as well. It is what this patient on your forum wrote: "The point is, doctors are starting to realize this is a procedure they can do".

Dr. Embry is a good man. His son was diagnosed with MS back in 95, and he's been fighting the hard fight ever since. He has a full time job as a geologist, and his MS work is all gratis. Sharon and some other folks asked him what he thought about CCSVI last summer, and he read our discussions on here (as well as searching pubmed) He e-mailed me after finding out the ID of Cheerleader, and put me in touch with Avis and the CTV team. I was able to connect them with Dr. Zamboni, Dr. Haacke and Jacobs in September, and the story came out the next month.

CCSVI is a new way of looking at MS for Dr. Embry...he was convinced of the autoimmune paradigm, and he has graciously been going over all the research I've been sending him on this new way of looking at MS- venous congestion, iron deposition, hypoxic injury, gray matter atrophy and immune activation as a secondary response. He admits, it's difficult to turn the research upside down- especially the connection to vitamin D- but he is open to it. He expresses the anger he is hearing from MS patients via his proactive charitable foundation, and he has a platform to do this. He is not a neurologist, not an MS specialist. But he is passionate, informed and smarter than most.
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To clarify some things about my post: I know who Dr. Embry is, of course. I actually exchanged a couple emails with him last year, when I was trying to get an update on the status of clinical trials for his diet. His website describes an ongoing study with the note that "it is hoped that results will be available early in 2008." Dr. Embry responded quickly and courteously to my emails, though he didn't actually answer my question with any specifics. At any rate, I agree his heart is in the right place, and he has been actively crusading for MS, which is a wonderful thing. I didn't intend my comments to be critical of the man, just of this rant/newsletter. This article plays fast and loose with the facts and mis-characterizes the status of CCSVI in the research community, which isn't helpful.

Regarding vitamin D, I'm also aware of the growing evidence of a link between Vitamin-D and MS. My own MS specialist had my Vit-D levels tested after my first visit (they were normal), and I now take D supplements every day (6000IU). But, current evidence does not support the "given" that vitamin D prevents MS. That would be huge if you could eliminate your chance of getting MS simply by taking a supplement. It would also cast down on CCSVI, since it doesn't seem plausible for a vitamin supplement to fix a physical problem. At any rate, the research articles on Embry's own website are far more cautious in their conclusions, such as the overview article that states: "Vitamin D supplementation may help prevent the development of MS and may be a useful addition to therapy. However, current studies are in small populations and are confounded by other variables, such as additional vitamin and mineral supplementation." (Emphasis mine). Maybe it's semantics, and he's using "prevent" synonymously with "reduce the incidence of".

Years ago I read a great book called "Influence: The Psychology of Persuasion". The basic premise of the book is that humans have evolved to have a bunch of decision-making shortcuts. These shortcuts tend to be effective time-savers much of the time, but once in a while they lead to incorrect decisions (which is how marketers and con-men can get us to do things that aren't in our best interest). For me, and I think for many neurologists and others with a science background, one shortcut for separating valid ideas from nonsense is to look for common markers of quackery and illogical thinking, e.g. red flags. If I see an article that states as facts things I know are not well supported by science, that's a red flag. An emotion-laden rant against the establishment is another. A couple like those, and part of my brain is ready to dismiss the whole article. If you want to convince skeptics, you're just making life harder if you use articles laced with these red flags.

/Scut

I am with scut on this, its not personal just about one article. Sbr487 is correct, we need to argue our case logically and calmly, with facts not rage.

On Vit D3 it may be interesting for you to know that, in Europe the incidence of MS increases as the amount of sunlight decreases EXCEPT in the Faroe Islands and costal Norway. Why ? Well maybe cos they have a diet rich in oily fish which is high in Vit D3. Not a proven fact but an interesting piece of data in the jigsaw that is MS. OK off topic I know.

MarkW

Mark W
from the Univ of Buffalo website

The new study will involve 1,600 adults and 100 children. The cohort will be comprised of 1,100 patients who were diagnosed with possible or definite MS, 300 age-and-sex matched normal controls, and 300 patients with other autoimmune and neurodegenerative diseases. Enrollment in the study has begun and will continue for two years. MS patients from across the U.S. are eligible to participate in the study.

http://www.buffalo.edu/research/article ... =105620009

I believe Ashton Embry was correct. The study is over a two year period

Sharon

MarkW wrote:I am with scut on this, its not personal just about one article. Sbr487 is correct, we need to argue our case logically and calmly, with facts not rage.

On Vit D3 it may be interesting for you to know that, in Europe the incidence of MS increases as the amount of sunlight decreases EXCEPT in the Faroe Islands and costal Norway. Why ? Well maybe cos they have a diet rich in oily fish which is high in Vit D3. Not a proven fact but an interesting piece of data in the jigsaw that is MS. OK off topic I know.

MarkW

Ashton Embry pointed this out several years ago. I believe the same is true in Canada - inland provinces have higher incidences of MS. Vitamin D definitely seems to play a role - how it ties to CCSVI is still a mystery.

Sharon wrote:Mark W
from the Univ of Buffalo website

The new study will involve 1,600 adults and 100 children. The cohort will be comprised of 1,100 patients who were diagnosed with possible or definite MS, 300 age-and-sex matched normal controls, and 300 patients with other autoimmune and neurodegenerative diseases. Enrollment in the study has begun and will continue for two years. MS patients from across the U.S. are eligible to participate in the study.

http://www.buffalo.edu/research/article ... =105620009

I believe Ashton Embry was correct. The study is over a two year period

Correct about what? FYI, the Buffalo study has said they'll release initial results in February. Check this thread: http://www.thisisms.com/ftopict-9656.html

If these initial results are encouraging, I'd expect more researchers to join in the fun. This year.

That said, it is probably true that it will be years before CCSVI treatment can be scientifically validated for long-term safety and effectiveness. No amount of shouting out of windows will change the fact that it takes long-term studies to determine long-term effects. The goal now is to get high quality studies started as soon as possible.

/Scut

Scut -

Mark wrote

AE says: a major research project which will be done at the University of Buffalo over the next few years
MW - the research to confirm prof Zamboni's correlation is underway and may report in Spring 2010, so AE inaccurate

I wrote

from the Univ of Buffalo website
Quote:
The new study will involve 1,600 adults and 100 children. The cohort will be comprised of 1,100 patients who were diagnosed with possible or definite MS, 300 age-and-sex matched normal controls, and 300 patients with other autoimmune and neurodegenerative diseases. Enrollment in the study has begun and will continue for two years. MS patients from across the U.S. are eligible to participate in the study.

Sharon


http://www.buffalo.edu/research/article ... =105620009

I believe Ashton Embry was correct. The study is over a two year period

Ashton Embry wrote

In this issue, Ian Cook has followed up on CCSVI and has focused on currently-available treatments for relieving CSSVI as well as a major research project which will be done at the University of Buffalo over the next few years.

ScutFarkus wrote: That said, it is probably true that it will be years before CCSVI treatment can be scientifically validated for long-term safety and effectiveness. No amount of shouting out of windows will change the fact that it takes long-term studies to determine long-term effects. The goal now is to get high quality studies started as soon as possible.

Actually, Dr. Zamboni treated his wife and Augusto Zeppi and other Italians over three years ago, and they remain relapse and progression free. The Liberation 65 are coming up on two years since treatment- only relapses are related to restenosis- and my husband is almost nine months out from his procedure at Stanford- still awake and relapse and progression free. If people are out of wait and want treatment now, they can consult with vascular doctors and interventional radiologists who understand the importance of venous return.
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