Dr Freedman: CCSVI no less than a cult

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

Dr Freedman: CCSVI no less than a cult

Postby TMrox » Sat Dec 04, 2010 10:55 am

Hi, I found this letter today in fb I have not seen it discussed in other thread so hope I'm not dupplicating. Rox


Christopher Alkenbrack
December 4th, 2010

Mr. Yves Savoie
CEO – Multiple Sclerosis Society of Canada
................................................................

RE: THE DEBATE ON THE CCSVI ISSUE AND REACTIONS FROM SOME MEMBERS OF THE MEDICAL COMMUNITY

Mr. Savoie,

A very incriminating message has come to my attention, one that was written by a member of your Medical Advisory Committee. I have personally spoken to the recipient of this message, and have express permission to share it with everyone.

BEGINNING OF THE MESSAGE

----- Forwarded Message ----
From: "Freedman, Mark" <XXXXXXXXXXXXX@Ottawahospital.on.ca>
To: xxxxxxxxxxxxxxx@rogers.com
Sent: Fri, December 3, 2010 1:49:45 AM
Subject: Re: MS

XXXXXXXXXX, I'm very disappointed that you would join this mass hysteria movement based on unfounded facts that has led to no less than a cult, stoked by media who are loving the reaction of people feeding them with endless material. What if research shows, as it appears to be doing, that veins of MS patients are no different than anyone else's? Should we all go trying to alter our 'normal' anatomy? Is there no lesson learned from the now famous tragic death of the Costa Rican man who refused the advice of his doctors a) to not have the procedure and b) not to try to unplug it? But who am I to question the word of the many self-acclaimed experts who feed this frenzy like the rock doctor Embry whose lifelong study of lifeless objects has given him the wisdom to comment on such complex issues?

I'm happy to discuss this with you anytime XXXXXXXXXXXXXX, but why you or any other of the cult members believe that I have influence over the government is beyond me. Our system supports evidence-based medicine. To do anything else would destroy it. Thus far the evidence simply does not support the theory of CCSVI regardless of the seemingly countless anecdotal reports.

But then, what do I know about such things?
--------------------------
Sent from my BlackBerry
END OF MESSAGE

I would encourage you to investigate and bring this member of the Committee that oversees MS research in Canada to order. This type of behaviour is inacceptable and unbecoming to a member of the medical community. It also further tarnishes the image of the Multiple Sclerosis Society of Canada – an image that is, in my humble opinion, beyond repair at this time... (letter continues)

Sincerely and respectfully,

Christopher ALKENBRACK
xxxxxxx, Nova Scotia

c.c. – All of the Division leaders for the MS Society of Canada ;
- The Honorable Prime Minister, Steven Harper;
- The Honorable Federal Minister of Health, Leona
- All of the Provincial Health Ministers;
- Dr. Mark Freedman;
- Several Politicians;
- Several Members of the Canadian press.

More at:
http://www.facebook.com/topic.php?uid=1 ... &topic=600
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby Blaze » Sat Dec 04, 2010 11:53 am

I prefer the CCSVI cult over the drug cult.
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Postby malden » Sat Dec 04, 2010 1:10 pm

Blaze wrote:I prefer the CCSVI cult over the drug cult.

Nembutol numbs it all
But I prefer… alcohol!

That's... Montgomery Clift, honey!

8)
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Postby thornyrose76 » Sat Dec 04, 2010 1:28 pm

Blaze wrote:I prefer the CCSVI cult over the drug cult.


Well said!!!!
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Postby Lyon » Sat Dec 04, 2010 1:37 pm

I'm aware going into it that this is going to seem inflammatory as all hell but could someone please highlight the part(s) of Freedman's letter that is(are) inaccurate or inappropriate?

If the Multiple Sclerosis Society of Canada responds as requested it will surely be cowering to a very vocal but far from certain percentage of those with MS. Majority? Minority? No one has a clue.
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Postby malden » Sat Dec 04, 2010 1:58 pm

Lyon wrote:...could someone please highlight the part(s) of Freedman's letter that is(are) inaccurate or inappropriate?...


inaccurate:
1. XXXXXXXXXXXXXX;
2. unfounded facts;
3. theory of CCSVI.

inappropriate:
1. veins of MS patients are no different than anyone else's;
2. evidence-based medicine;
3. the rock doctor Embry;
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Postby scorpion » Sat Dec 04, 2010 3:10 pm

"But who am I to question the word of the many self-acclaimed experts who feed this frenzy like the rock doctor Embry whose lifelong study of lifeless objects has given him the wisdom to comment on such complex issues?"


:lol: :lol:
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Postby ikulo » Sat Dec 04, 2010 3:38 pm

Anyone know who he is responding to? A patient? A colleague? Who is Freedman disappointed with and how is this person joining the hysteria? Answer that, and I can tell you what's wrong with the letter.
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Re: Dr Freedman: CCSVI no less than a cult

Postby ikulo » Sat Dec 04, 2010 3:44 pm

BTW - if Freedman is concerned about tragic deaths maybe he should stop doing chemotherapy with stem cell transplants. That death was no less tragic than the recent CCSVI related death.
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Postby TMrox » Sat Dec 04, 2010 3:54 pm

ikulo, it seems that he responded to one of his patients who is about to have CCSVI treatment.

BTW, Dr Freedman is member of a team that is investigating CCSVI

Project Details: This team is employing “3 Tesla” MRI technology that is twice as powerful as a standard MRI magnet to explore differences in the anatomy of veins in the neck, chest and spine and to assess for iron deposits in the brain. They are comparing findings in 50 people who have MS with those in 50 age-matched healthy volunteers. They are also using Doppler ultrasound techniques that were used by originators of the CCSVI hypothesis, and seeking verification that there is a relationship between blocked veins and areas of iron deposition in the brain by measuring levels of iron in the brain in those with and without vein blockages. The questions the team is focused on include: How frequent are the vein blockages and abnormalities in people who do not have MS? How frequently do they occur in people with MS? Can the team detect brain iron pooling in patients with blocked veins?

These studies should lead to a better understanding of normal variations in the anatomy of the veins that drain the brain, and the potential role of venous insufficiency in MS.

Recruitment: A total of 100 participants including participants with MS and healthy individuals. Participants will be recruited through The Ottawa Hospital MS Clinic Research Unit. Recruitment number is approximate and is subject to change.

Personnel (all are affiliated with The Ottawa Hospital, the Ottawa Hospital Research Institute and the University of Ottawa):

Dr Carlos Torres, The Ottawa Hospital
Dr. Ian G. Cameron, Department of Diagnostic Imaging (MRI Unit)
Dr. Matthew J. Hogan, Division of Neurology
Dr. Mark E. Schweitzer, Department of Radiological Sciences and Department of Diagnostic Imaging
Dr. Cheemun Lum, Department of Diagnostic Imaging
Dr. Miguel E. Bussière, Division of Neurology
Dr. Santanu Chakraborty, Department of Diagnostic Imaging
Dr. Mark S. Freedman, Division of Neurology (MS Research Unit)

Quotes – Dr. Carlos Torres:

“Before undertaking large expensive studies to examine the benefits of treatment of these blockages, several important questions must be answered: Do these blockages occur in patients that do not have MS? Do they occur in all patients with MS? Can we detect brain iron pooling in patients with blocked veins? We hope to answer these questions.”

“Results of this study will definitively confirm whether venous obstructions are clearly associated with MS or are a normal phenomenon. In addition, it will indicate whether excess iron deposition in the brain correlates with the presence of associated venous obstruction. Only with such results could a treatment trial aimed at relieving obstructions be considered.”

Timing of this study: 7/1/10-6/30/12
<shortened url>
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby CureIous » Sat Dec 04, 2010 8:23 pm

TMrox wrote:ikulo, it seems that he responded to one of his patients who is about to have CCSVI treatment.

“Before undertaking large expensive studies to examine the benefits of treatment of these blockages, several important questions must be answered: Do these blockages occur in patients that do not have MS? Do they occur in all patients with MS? Can we detect brain iron pooling in patients with blocked veins? We hope to answer these questions.”

“Results of this study will definitively confirm whether venous obstructions are clearly associated with MS or are a normal phenomenon. In addition, it will indicate whether excess iron deposition in the brain correlates with the presence of associated venous obstruction. Only with such results could a treatment trial aimed at relieving obstructions be considered.”

Timing of this study: 7/1/10-6/30/12
<shortened url>




, several important questions must be answered: Do these blockages occur in patients that do not have MS? .


I'm sure they do, but this makes it sound as they are expecting to find that out, and of course when they do, it will be one more nail in the CCSVI coffin. No %'s of what would be normal variations, stenotic veins not leading to MS/CCSVI or as a result of, whatever you like to call it.
It's patently obvious they expect to find these variations in normals, as we already know they occur in the absence of MS, then of course make a conclusion that variations are a normal part of the anatomy, nothing special. Just the fact that they delineate it as an "important question which MUST be answered" means they suspect just that to be the case. I doubt they will go so far as to image the insides of the veins either, to see if valve issues, webs, septums and the like could be a contributing factor.

Because of course they follow up with : Results of this study will definitively confirm whether venous obstructions are clearly associated with MS or are a normal phenomenon.

Once again, set the bar so unattainably high, that the results can be written beforehand. "Definitively confirm?" from one study? So they have not only basically told you where they are going, but have confirmed definitively that they WILL get there. Such a high bar to set, CCSVI and all it's sundry variations and things to discover, doesn't stand a chance in this scenario. Just like the Dake results get spun by the anti-stenters, and by that I mean the "adamantly against stents at all costs" preachers, , not those choosing to forego at this time, or the wary. After all, isn't that why we all are told to shoot up the drugs, to stabilize our disease process? What stabilized mine with no DMD's for going on nearly 2 years now and no new lesions? Put out the Dake results, and before you hit "enter" on the keyboard, they have a highlighter out to accentuate the couple of less than stellar results. Brilliant.

The study results are already a done deal, if this was a CCSVI researcher putting this drivel out ahead of time, it would be skewered and served with a dipping sauce before it ever started. The results are done deal to repeat, it's just a matter of when they release them. The presumption is written into the proposal, no exegesis of the results needed.

With a nice and long 2 year time frame, they don't seem to be in too much of a rush. 100 people? They could have that done, and analyzed in months. Just scans, 3-4 a day easy. This long timeframe they created from thin air gives the NMSS plenty of time to get in front of this thing, whatever it is. Pure politics and not much else.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Cece » Sat Dec 04, 2010 8:30 pm

It's exciting being this involved, on a follower or patient advocate basis, with research of this magnitude. So far we'll get research that's positive toward CCSVI and research that's negative, it's messy that way, and no one study is at this time definitive. I don't feel too threatened. There are enough CCSVI investigators in action that I think we will get answers and they won't be from the study that Dr. Freedman is involved in. This is a relatively easy thing to prove or disprove, all things considered.
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Postby CureIous » Sat Dec 04, 2010 9:43 pm

Cece wrote:It's exciting being this involved, on a follower or patient advocate basis, with research of this magnitude. So far we'll get research that's positive toward CCSVI and research that's negative, it's messy that way, and no one study is at this time definitive. I don't feel too threatened. There are enough CCSVI investigators in action that I think we will get answers and they won't be from the study that Dr. Freedman is involved in. This is a relatively easy thing to prove or disprove, all things considered.


True, no one study is definitive, but the way they individually are spun leaves them more in the battering ram category than a solid scientific building block. It's just a delaying tactic while they figure out how to get it all or most of it back under the neurological/AI umbrella.

Unfortunately, as is the case in most big $ and big emotion issues, politics and personalities become the focal point. The news in whatever incarnation you can imagine, be it regular broadcast or internet flavors, then picks the best fit for the preconceptions of the button pushers and runs with it. Unfortunately, the internet few are no match whatsoever for those who have the ears of millions at their immediate disposal.

Fortunately though, some have the capability to see beyond all that noise and get at the available info and decide for themselves. The rest, will just go with what they hear or what their "authority" says.

Reminds me of two squabbling siblings, both wanting to reach Mom first to present their version of events. Or a jury trial, where lawyers are attempting to sway either way, by cherry picking the pro/cons of their arguments. Both have one thing in common, persuasiveness, attraction, flattery, appearance, style, become the subtle undercurrent. One can at least appreciate that most of the Dr's involved, have made little foray into that particular arena, choosing instead to stick to the science first, collaborating with colleagues, holding symposiums and the like. Not exactly evening news material, but certainly more depth of impact...

I have no doubt we are in for some intriguing results from other trials besides this one. None whatsoever, I live it every day. Today I took a 10 hour long intensive training class, another tomorrow, and for the next two weekends, my first in years, to further my education and skill set in my trade, my mind felt as sharp and body as vibrant at the end of the day as the beginning. Ready to hit it again tomorrow. Nice to have the brain back, the energy level, not just to survive any more, but to thrive.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Cece » Sat Dec 04, 2010 10:00 pm

CureIous wrote:It's just a delaying tactic while they figure out how to get it all or most of it back under the neurological/AI umbrella.

I think it's more a case of "you can't get the genie back in the bottle." The neurologists will catch on eventually, right now they don't even know it's out of the bottle. 8O
Today I took a 10 hour long intensive training class, another tomorrow, and for the next two weekends, my first in years, to further my education and skill set in my trade, my mind felt as sharp and body as vibrant at the end of the day as the beginning. Ready to hit it again tomorrow. Nice to have the brain back, the energy level, not just to survive any more, but to thrive.

That is something! Glad to hear it.
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Postby bluesky63 » Sun Dec 05, 2010 6:19 am

CureIous, your energy is awesome. :-)

It makes me think of the statement in the email that reads "Our system supports evidence-based medicine. To do anything else would destroy it. Thus far the evidence simply does not support the theory of CCSVI regardless of the seemingly countless anecdotal reports."

At some point, the "seemingly countless anecdotes" will be captured in databases like Dr. Sclafani's very well-designed arrangement with several industry-accepted, standard surveys and assessments. The numbers will be *much* greater than 50/50. And the results, however they turn out, will be the evidence-based medicine that that will form a basis for the physicians in "our system" to make appropriate recommendations.
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