Dr Freedman: CCSVI no less than a cult

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

Postby Rokkit » Sun Dec 05, 2010 8:45 am

“Results of this study will definitively confirm whether venous obstructions are clearly associated with MS or are a normal phenomenon."

Well then, that's where Zamboni went wrong. He should have just declared his study definitive.
Rokkit
Family Elder
 
Posts: 669
Joined: Tue May 19, 2009 3:00 pm

Advertisement

Postby Doodles » Sun Dec 05, 2010 9:03 am

One of the things wrong with the Freedman letter is the assertion that research is apparently proving the CCSVI theory wrong. What research is this and does this give anyone a feeling of confidence in the research that at some point will be conducted in Canada and that Freedman is involved? Another issue is the assertion that the media loves people feeding it information and stories. Is this why Freedman and others, including Torres, participated in a "woe is me" article in the Toronto Star?
User avatar
Doodles
Family Member
 
Posts: 38
Joined: Sat Oct 23, 2010 3:00 pm

Postby scorpion » Sun Dec 05, 2010 9:44 am

Doodles wrote:One of the things wrong with the Freedman letter is the assertion that research is apparently proving the CCSVI theory wrong. What research is this and does this give anyone a feeling of confidence in the research that at some point will be conducted in Canada and that Freedman is involved? Another issue is the assertion that the media loves people feeding it information and stories. Is this why Freedman and others, including Torres, participated in a "woe is me" article in the Toronto Star?


CCSVI NEEDS people like Freedman to be a part of CCSVI research in Canada and everywhere else. I do not believe Freedman is alone in what he believes but he is certainly one of the more vocal skeptics. Allowing only Zamboni and his pals to be the only one conducting the trials would be a huge mistake. We know what there position on CCSVI is now they just need to start convincing others, such as Freedman.
User avatar
scorpion
Family Elder
 
Posts: 1323
Joined: Wed Nov 05, 2008 4:00 pm

Postby Cece » Sun Dec 05, 2010 10:07 am

We don't need to convince Freedman.

It would be nice for our IRs to have partner neurologists, to figure out how the separate conditions of CCSVI and MS intertwine. But it is only the vascular docs who have the ability to fix our CCSVI blockages. We need our vascular docs and, by the amount of interest SIR and ISET are giving CCSVI, we've got our vascular docs.
Cece
Family Elder
 
Posts: 8989
Joined: Mon Jan 04, 2010 4:00 pm

Postby TMrox » Sun Dec 05, 2010 10:24 am

Image
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
User avatar
TMrox
Family Elder
 
Posts: 263
Joined: Tue Jun 01, 2010 3:00 pm

Postby Cece » Sun Dec 05, 2010 10:30 am

:lol: kudos!
Cece
Family Elder
 
Posts: 8989
Joined: Mon Jan 04, 2010 4:00 pm

Postby EJC » Sun Dec 05, 2010 10:44 am

Cece wrote:We don't need to convince Freedman.



Actually that's exactly what is required.

Unequivocal evidence that knocks his ranting into a cocked hat is exactly what is required to accelerate acceptance of the condition and treatment.

The trouble with something entirely new is the tests and benchmarks sometimes have to established even before you can apply the results of those tests.

Heatlhy sceptism is good, it makes people want to prove that tlittle bit harder that something is real.

There is a fine line though between being an outspoken sceptic and making yourself look a right cock.
Last edited by EJC on Sun Dec 05, 2010 10:49 am, edited 1 time in total.
User avatar
EJC
Family Elder
 
Posts: 614
Joined: Tue Apr 20, 2010 3:00 pm
Location: Surrey, UK

Postby EJC » Sun Dec 05, 2010 10:47 am

TMrox wrote:Image


That's outstanding. I love sarcastic humour.
User avatar
EJC
Family Elder
 
Posts: 614
Joined: Tue Apr 20, 2010 3:00 pm
Location: Surrey, UK

Sometimes satire is a good choice, too

Postby 1eye » Sun Dec 05, 2010 11:36 am

I agree: no less than a cult, but much more.

I don't approve of censorship. There are unfortunate times when it is necessary, as it was in WW2, and even more recently. Remember fifty percent of fame is notoriety. If you bite off chicken-heads, you too can become famous. Every time I think I might have heard the last from this person, someone must make the mistake of giving him more air-time somewhere, because he seems to make another appearance, always when things seem to be going better - even if it's a leak. I like Blackberries, but sometimes they can be misused, and sometimes they seem to take over the bodies of their victims.

Please, folks, remember loose lips sink ships. Is there really any need to discuss, when discussion of him seems to be self-perpetuating? Our real enemy is congenital, a result of bad evolutionary luck most of the time.

Let's talk about, and with, those who are willing to help us fight it, and its fall-out, shall we?
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2874
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Postby Donnchadh » Sun Dec 05, 2010 11:45 am

EJC wrote:
TMrox wrote:Image


That's outstanding. I love sarcastic humour.


Great!

Please consider cross-posting this in the wheelchair satire thread....humour is what's keeping me going.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
User avatar
Donnchadh
Family Elder
 
Posts: 513
Joined: Sat Jan 23, 2010 4:00 pm

Postby erinc14 » Sun Dec 05, 2010 3:01 pm

TMrox wrote:Image

:P :!: omg that is so funny
User avatar
erinc14
Family Elder
 
Posts: 599
Joined: Sat Jun 12, 2010 3:00 pm
Location: Montreal

Postby Mathd » Sun Dec 05, 2010 8:29 pm

what I dont understand is how someone with the mind so close is doing research???

Think outside of the box is the key to find solution for any problem!!

but sometine it's more about ego, maybe he doesnt want to be told his researchs for the past 20years was a huge money pit for nothing...

anyway, he's not the center of the universe,
User avatar
Mathd
Family Member
 
Posts: 58
Joined: Mon Mar 08, 2010 4:00 pm
Location: Gatineau, QC, CA

Postby CureIous » Mon Dec 06, 2010 1:00 am

bluesky63 wrote: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.


As if to spite myself, I couldn't sleep last night and had to drag through another 10 hour class (they saved all the hard mental stuff for today of course) on 4 hours sleep. It's midnight and I'm still going lol. Busy days. Busy is good. I think with Dr. Sclafani's dogged determination, those 50/50 stenosis rates will pare down a bit, maybe even more when you account for the other flow disturbances which are being more taken into account these days.

You know what the greatest part is? Not having that "waiting for the other shoe to drop" thought at the back of the head every day. I'm either in the greatest and most consistent day to day remission I've ever had since 2004, or.....

Hard to say. One day at a time as the saying goes... Thank you for your comments.

Mark.
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
User avatar
CureIous
Family Elder
 
Posts: 1200
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Postby Jugular » Mon Dec 06, 2010 9:18 pm

TMrox wrote:Image
if it weren't for Freedman's e-mail, this letter would never have been written. And we would be the lesser for it.

~snap burrrrrn~
User avatar
Jugular
Family Elder
 
Posts: 375
Joined: Mon Dec 21, 2009 4:00 pm

Postby TMrox » Wed Dec 08, 2010 3:03 am

Dr Embry has written an open letter to Freedman see thread:
http://www.thisisms.com/ftopict-14886.html

Here an extract of that letter:

December 7, 2010
Dear Mark,

I was recently forwarded a copy of an email which you had sent to one of your patients regarding the CCSVI issue. I was not surprised by your unwavering belief that CCSVI is nonsense but was slightly taken aback by your over-the-top view that all those who think that CCSVI treatment may be of value are nothing more than frenzied, cult members. I was also somewhat surprised that you mentioned me but was glad you asked an important question ”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?”

You are correct that my primary scientific research activity for the past 42 years has revolved around inanimate rocks, mainly those in the Canadian Arctic Archipelago. I’ll be glad to send you some of my published geological papers if you have an interest in such things.

I must point out that it has not been my geological studies which have “given me the wisdom” to comment on complex issues associated with multiple sclerosis. My knowledge on MS comes from reading thousands of scientific papers and countless abstracts on MS and related subjects (e.g. nutrition, autoimmunity in general, and more recently vascular issues). My pursuit of scientific knowledge in regards to MS has been driven by a desire to ensure my son is doing everything he can to prevent the progression of his MS.

I would emphasize that I try hard to make sure any written comments I make on MS, especially recommendations on how to help control disease progression, are backed by solid science, including both empirical data and critical, rational reasoning. I suppose you could say that many years of geological research have instilled this hard-core, scientific approach so perhaps you are not entirely wrong with your statement that the source of my MS “wisdom” is my geological research.

I thought it might be useful if I discussed how we sharply differ on three important scientific issues which dominate decisions regarding the treatment of MS. These issues are CCSVI, vitamin D and the CRAB drugs. These differences show how we significantly vary when it comes to doing science and to using science to guide actions. Following this, I will wrap-up with a few possibilities on why such differences between us exist, despite the fact we both would claim we are scientists wanting to understand MS so as to allow us to make recommendations on how to treat it.


CCSVI
...Since my initial immersion into the CCSVI literature, I have closely followed CCSVI research and this has included visiting with some of the researchers themselves. I have been most impressed with the CCSVI research being done at the University of Buffalo and their work, involving 500 subjects, has robustly confirmed the high association of CCSVI with MS. Such a high association, the plausible biological mechanisms which link CCSVI to the MS disease process, and the established nature of the venous problems associated with CCSVI, establish beyond a reasonable scientific doubt that CCSVI plays a role in the MS disease process.

I have also kept a close watch on the results of worldwide CCSVI treatments because such results, due to their high numbers, are important scientific data that cannot be ignored. Currently, there are at least 75 centres worldwide doing CCSVI treatment and between 100 and 200 procedures are now being done each day. These treatments involve the use of venography which is the gold standard for the identification of CCSVI and, of the 12,000+ patients treated so far, over 90% have had undoubted CCSVI. Furthermore, there have been thousands of well documented cases of substantial improvement of a variety of MS symptoms following CCSVI treatment.

As a scientist, I cannot ignore the CCSVI treatment data and to do so would be bordering on scientific incompetence/fraud. To sum up, the published scientific data on CCSVI and the many thousands of clinical procedures which have identified and treated CCSVI leave no reasonable doubt as to the existence of CCSVI and that it plays a role in the MS disease process.

I would contrast my objective, scientific appraisal of CCSVI with your emotional and non-scientific approach. I assume the first time you were exposed to the science of CCSVI was through the CTV documentary and that you had failed to read the papers which had been published on this topic before that time. Your public response to a group of MS patients that the Zamboni work was a hoax before you had read his papers, reveals a complete lack of scientific method and objectivity by you on this subject. Furthermore, your insistence on ignoring the results of many thousands of CCSVI procedures also underscores your inability to take an unbiased, scientific approach when it comes to CCSVI. I will discuss possible reasons for such a failure later.

The bottom line is that you have not spent time with the CCSVI researchers, you have not read most of the 200+ scientific papers which bear directly on the CCSVI question, and you have not taken the time to evaluate the results of the huge number of CCSVI procedures which have been done. Any claim that your comments regarding CCSVI are science-based is not supportable. Thus, when it comes to CCSVI my comments on the subject are given much more weight than yours simply because I know far more about the subject than you do and most importantly, I have taken an objective, scientific approach to CCSVI and MS, not an emotional, highly prejudiced one like you have. I can only encourage you to try to be more objective and scientific when it comes to CCSVI.

letter continues....

Finally we are left with the question of why I have chosen an unbiased scientific path whereas you have gone in the opposite direction. My only hypothesis to explain this is that your financial ties to the drug companies have prejudiced you against any non-drug therapy such as adequate vitamin D and CCSVI treatment and made you blind to the robust data which demonstrate the drugs do not slow MS progression. On the other hand, with my son having MS, I have all to lose and nothing to gain by not ensuring that I carefully examine all scientific hypotheses for MS in a rigorous and unbiased manner. Perhaps also the fact I was trained as a scientist (PhD) whereas you were trained as an MD (ie engineer) might also come into play when it comes to the great difference in our application of science for helping persons with MS.

I hope this answers your question of why persons with MS trust what I have to say about various proposed therapies for MS far more than they trust you. They can tell the difference between an objective, science-based analysis and a self-serving, unscientific opinion every time.

Ashton Embry

Full letter at:
http://tinyurl.com/3739t2m
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
User avatar
TMrox
Family Elder
 
Posts: 263
Joined: Tue Jun 01, 2010 3:00 pm

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users