This Is MS Multiple Sclerosis Community: Knowledge & Support

I was forwarded this email from a friend (who got it from a friend, so all content unverified) presumably from the Associate Director of Stanford's MS Center. The email gives some insight into the infighting that seems to be taking place at Stanford because of CCSVI and Dr. Dake's work.

<don't shoot me, I'm just the messenger >

-begin forwarded message -

<I removed the text as per cheer's suggestion. It was third or fouth-hand information, so I am sure it will surface elsewhere. In addition, it was sent to the department, not one individual, so it's "out there."

In any case, it's gone (for now).>

Hmmmmm...........well that's not sugar in my tea tis morning..........

Yeah, I have to wonder if the narrowing in my left jugular was something that Dake would have normally suggested stenting ... but could not do the procedure, and did not want to tell me I'd come out for nothing because the procedure had been stopped? I'm not upset about it at all, I'm comfortable with no treatment based on what I saw in the limited MRV scans ... but still I wonder!

What's so strange about this is the complete lack of any positive interpretation of CCSVI. You would think he would at least convey some tone of this being a promising avenue for patients if it works out, but nothing. What's going on at the Stanford MS Center? Are you interested in seeing your patients get better? Even a little bit?

I feel guilty reading an email not intended for my eyes. But the negative vibes emanating from the wording of this email makes me very sad indeed.

ozarkcanoer

I'll just put this here without comment...
http://neurology.stanford.edu/profiles/ ... s&fid=8456

Jeffrey Dunn, MD

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yea sure, we are ging to see a clinical trial soon.............. it's all over folks!

alright I'll delete mine tooo - too bad i thought it was funny!!!

After reading up on Lawrence Steinman M.D., I wonder if he isn’t a fly in the ointment? I sight the fact that he is the Founder of Bayhill Therapeutics and honored with the 2004 National MS Society/American Academy of Neurology's 2004 John Dystel Prize for Multiple Sclerosis Research, for his major contributions to our understanding of MS-like disease models, and for translating these findings to the clinical development of novel therapeutic strategies for MS. And that $816,750 award is good only until 3/31/10.

Here’s more:

PALO ALTO, Calif.--(BUSINESS WIRE)--April 27, 2004
Professor Lawrence Steinman, MD, of Stanford Medical Center and Founder of Bayhill Therapeutics, has been chosen by a committee of his peers to receive the 2004 John Dystel Prize for Multiple Sclerosis (MS) Research. Dr. Steinman is being honored for his major contributions to scientific understanding of MS-like disease models, and for translating these findings to the development of novel therapeutic strategies for people with MS.
"MS starts in a few trees and then starts burning the whole forest," said Lawrence Steinman, MD, a ...

SAN MATEO, Calif. -- Bayhill Therapeutics Inc., a clinical-stage biopharmaceutical company leveraging its proprietary BHT-DNA[TM] platform to develop novel and targeted autoimmune disease treatments, today announced that Lawrence Steinman M.D., Professor of Neurology, Pediatrics and Genetics at Stanford University and Founder, Director and Scientific Advisory Board Chairman of Bayhill Therapeutics, has been awarded an endowed chair at Stanford as the George A. Zimmerman Professor. Dr. Steinman is the inaugural holder of the chair, funded to support multiple sclerosis (MS) ...

Nuon Therapeutics' founding scientists, Marc Feldmann, MD, PhD and Larry Steinman, MD, have conducted wide-ranging preclinical testing of tranilast.
...
Professor Steinman is professor, Departments of Neurology and Neurological Sciences, Stanford University, and a specialist in multiple sclerosis (MS).His research identified the biological pathways that led to the development the MS therapeutic, Tysabri®.Professor Steinman's work with tranilast showing improvement in an animal model of MS was published in the journal Science.
...
The company's scientific founders are Prof. Larry Steinman at Stanford University, Palo Alto, Prof. Marc Feldmann, Imperial College, London, and Dr. Michael Selley, formerly from the Australian National University.

Collaborative MS Research Center Award
$816,750; 4/1/05-3/31/10
Principal Investigator
Lawrence Steinman, MD
Stanford University, Palo Alto, Calif.

http://www.nationalmssociety.org/resear ... index.aspx

So it will interesting to see if he comes on board with CCSVI, especially if it receives funding, or if he goes looking for more pharma monies.

Lora

Just the typical politics, CYA and interdepartmental infighting to be expected. It's all noise and nothing surprising or anything, although I hope the person who leaked this did it from an off-site venue.

What else is Stanford going to say, "throw the doors open everyone come on in?". Of course not. If I had the choice between angioplasty and nothing, you know which one I would pick in a heartbeat. (meaning of course that I think angioplasty will replace stenting for the time being)They cannot stop this and if not here then somewhere else. It's not over by a long shot, but I am saddened so many hopes got up for a procedure then were dashed, albeit temporarily from my POV.

And also to toss in there, just how far Dr. Dake went out on a limb for us, all needs aside to improve the procedure and such.

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

Poor Dr. Dake. I just brought my husband to him to look for a VASCULAR disorder in his jugular veins, which he had. Dr. Dake agreed to open those veins, and never made any promise or statement as to the relationship to his MS.
I'm so sorry for everyone that cannot have their VASCULAR problems addressed by this caring and committed surgeon because NEUROLOGISTS have stopped this treatment, but I will continue to update on the CCSVI page and work with the doctors involved.

I do think this e-mail should probably be removed, since it was not intended for public viewing, and must violate some privacy law -
I'm sure NHE will advise.
Joan

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Putting the ethical issue of posting someone's private email on a public forum aside... there is some merit to what he is saying. Given the recent adverse events, it's only prudent to stop these type of procedures unless it is in a clinical trial. The law requires a lot more disclosure to patients in clinical trials as to the known and unknown risks of a new procedure/drug, so it's in the interest of OUR safety that this treatment be done under the umbrella of a clinical trial.

Plus, who the hell wants their institution to get screwed over if the adverse events increase in number and they are faced with lawsuits? Unless we have more trials, his statement is not out of line at all where he says: "this is a procedure that cannot be defended, supported or recommended on risk-benefit considerations at this time." Even the non-pharma affiliated doctors at NIH are saying this.

Clinical trials are good...let's be glad that they are at least considering that.

_________________
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />

But the point is he was not shut down by the adverse reactions he was shut down because the MS clinic wanted him shut down, per the email.

Oh just to point out the blaringly obvious, and once again, all safety issues and considerations aside, EVERYONE at that hospital knew what was happening, so I presume the high level brass knew also. However, they let this go on for what, nearly 6 months? That indicates to me that "as long as there are no problems", they will turn a blind eye and there's no statement issued, no "putting a halt to the procedures", etc etc.

But the second there is a problem, and that's not to make it a light problem, it IS serious and needs to be addressed, they all of the sudden *realize* that surgeries are being performed on MS patients? Come off it already, they knew all along and chose to allow it, that implies tacit approval, without having to look at an email, and now the SHTF they disavow it completely?

Like Mom used to say, "Come off it already".

_________________
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

Well, don't patients die from other surgeries? Do they put a stop to all kidney operations or heart surgeries? This needs to be verified - how do you find out from STanford if this is real?

Besides the whole tone issue as noted by Rokkit, this is actually the part that got to me. There are many, many doctors and patients who can defend, support and recommend this procedure. Perhaps the risk-benefit considerations seem off from the MS Clinic's perspective, and I can appreciate that, but it is not logical or fair to apply that statement globally.

As many of us who have had or wanted this procedure have noted, everyone is going to feel differently about the risks. There is a risk in doing nothing. There is a risk in taking other MS meds. No one knows when the seeds of disability start to form. No one knows what implications of opening the veins are for MS.

But there are many, many who recommend opening up occluded jugular veins because the benefits far outweigh the risks.

_________________
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri