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The following is the body of an email that I sent to the Administrative Director of the Hope Center for Neurological Disorders at the Washington University School of Medicine in St Louis. Any comments ???

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Dr Zamboni is a vascular doctor. Most scientists/doctors researching MS are neuroscientists/neurologists. We need this kind of collaboration at the Hope Center for MS research : discussions of Zamboni's work between vascular scientists/doctors and neuroscientists/doctors. All the information that I have sent to you may be alien to a neurologist/neuroscientist. The doppler sonography would be most meaningful to someone who does vascular medicine or research.

The big war is : is MS a vascular disease or an autoimmune disease, or both ??? Is CCSVI the way to stop progression in MS patients or immune modifying drugs, or both? Should research money go for new immune modifying drugs or for repair of the brain, or both ?? I vote for repair of the brain. Repair of the brain may encompass all the neurological disorders under the aegis of the Hope Center. I think the focus should be on repair of the brain for ALS, stroke, MS, spinal cord injury etc etc. I believe that the ongoing MS research on MS at the Hope Center is aimed at the fundamentals of the molecular biology of the brain tissue and immune system. That is GOOD ! If the overwhelming evidence, as time passes (hopefully sooner than later), favors venous involvement in MS, then CCSVI research could positively impact research that is ongoing at the Hope Center now, and that is GOOD !

I think it is great. I can't wait to hear how they respond.
Keep up the good work!
Beth

_________________
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.

I don't think it is very helpful to talk in terms of VS or war. But fine for the gist of it. Maybe less !!!???!!! would be more professional.

This is just a minor thing, but CCSVI is a condition, not a treatment. As such, it might be better to word the above sentence...

"Is treating CCSVI the way to stop progression in MS patients or immune modifying drugs, or both?"

NHE

Thanks, WhyAreWeHere and NHE, both very good suggestions. I've already sent the email, but I will rework the letter and resend it.

WhyAreWeHere and NHE ?? How does this sound ?

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Dr Zamboni is a vascular doctor. Most scientists/doctors researching MS are neuroscientists/neurologists. We need this kind of collaboration at the Hope Center for MS research : discussions of Zamboni's work between vascular scientists/doctors and neuroscientists/doctors. All the information that I have sent to you may be alien to a neurologist/neuroscientist. The doppler sonography would be most meaningful to someone who does vascular medicine or research.

The question is : is MS a vascular disease or an autoimmune disease, or both ? Is treating CCSVI the way to stop progression in MS patients or immune modifying drugs, or both ? Should research money go for new immune modifying drugs or for repair of the brain, or both ? I vote for repair of the brain. Repair of the brain may encompass all the neurological disorders under the aegis of the Hope Center. I think the focus should be on repair of the brain for ALS, stroke, MS, spinal cord injury etc etc. I believe that the ongoing research on MS at the Hope Center is aimed at the fundamentals of the molecular biology of the brain tissue and immune system. That is GOOD. If the overwhelming evidence, as time passes (hopefully sooner than later), favors venous involvement in MS, then CCSVI research could positively impact research that is ongoing at the Hope Center now, and that is GOOD.

If you really want me to comment/change things, you'll have to wait until my morning...I am going to bed exhausted! But I do appreciate the changes made.

OK, here is a less one-sided letter, trying to be more objective, leaving out the "I think". What I think here is irrelevant. The only thing relevant is that CCSVI get some attention. This should be less "us vs them'.

ozark

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Dr Zamboni is a vascular doctor. Most scientists/doctors researching MS are neuroscientists/neurologists. We need this kind of collaboration at the Hope Center for MS research : discussions of Zamboni's work between vascular scientists/doctors and neuroscientists/doctors. All the information that I have sent to you may be alien to a neurologist/neuroscientist. The doppler sonography would be most meaningful to someone who does vascular medicine or research.

The question is : is MS a vascular disease or an autoimmune disease, or both ? Is treating CCSVI the way to stop progression in MS patients or immune modifying drugs, or both ? Should research money go for new immune modifying drugs or for repair of the brain, or both ?

I believe that the ongoing research on MS at the Hope Center is aimed at the fundamentals of the molecular biology of the brain tissue and immune system. That is good. If the overwhelming evidence, as time passes (hopefully sooner than later), favors venous involvement in MS, then CCSVI research could positively impact research that is ongoing at the Hope Center now, and that is good.

I got confused because you initially wrote that you "sent" it, meaning there was no more use for input from us....

To be honest I would really word it quite differently, leave out personal judgements like "That is good", and start with a little bit of introduction such as:

"Dear ..., I recently sent articles and other information (?) about cerebro-spinal venous insufficiency and its possible connection to MS. The researcher behind the initial studies was Dr. Paolo Zamboni from the University of Ferrara, who is a vascular surgeon, unlike most scientists/doctors researching MS. I believe that given the evidence presented in the information I sent you, collaboration between neurologists and vascular could prove to be fruitful. Vascular surgeons would be most familiar with the doppler sonography that is used as a tool to explore the connection between veins and brain/spine damage in MS, while neurologists/neuroscientists have agglomerated a wealth of knowledge of MS symptoms and development.

Studies by the Hope Center in this direction could lead to answers to the question whether MS is an auto-immune or vascular disease, or both. It would also educate donors whether research money should be used for new immune-modifying drugs or the re-establishment of normal venous return from the brain to the heart, or both.

It is my understanding that the ongoing research on MS at the Hope Center is aimed at the fundamentals of the molecular biology of brain tissue and the immune system. Research into venous reflux and the resulting reduction in shear stress and blood-brain barrier integrity would fit well into this framework, and allow the Hope Center to guide the way in this potentially groundbreaking discovery."

I didn't have time to think about the wording much now, but this is the kind of slant I would give it.

radeck... Your version of my letter is very good. Thank you. I have been communicating with the Administrative Director of the Hope Center for Neurological Disorders since November 4 of this year. I happened to know a distinguished professor of neuroscience and Washington University. He was my foot in the door, so to speak. On November 11 I had a chance to speak in an open meeting with The Director of the Hope Center, a doctor and scientist by the name of Mark Goldberg, and some major donors to Hope Happens, the fund-raising arm for the Hope Center. I was quite surprised at this opportunity. I spoke for about 12 minutes and I gave Dr Goldberg Zamboni's paper and the symposium minutes written by cheer. He seemed interested.

Since November 4 I have been in constant communication with the Administrative Director. He is very indulgent and encouraging, but he is a very busy man. But I believe he understands the promise of CCSVI, even though he is a lawyer and not a doctor. So the letter that I wrote was not "out of the blue". I am offering the Hope Center a personal grant to pursue CCSVI and MS. I have suggested that the grant go to either training someone on Zamboni's doppler ultrasound techniques, or to fund a symposium. I would like the symposium to include Dr Zamboni if possible. But I want to make sure that interventional radiologists and related fields, professors and doctors from Wash U, be included in this symposium.

So my letter is a little less formal than perhaps it ought to be, because I feel comfortable sending such missives to the Administrative Director. You will notice my BIG NAMES thread. He suggested this. I have sent the letter. But by all means I want your input. It could be that this letter will eventually go to others, scientists and doctors, at the Hope Center.

Unfortunately I just discovered that my contact, the Administrative Director, is going on vacation for a week for Thanksgiving. So I have lost my lifeline. It is scary to know all this about CCSVI but to feel so helpless.

ozark

Hey Ozark-
You're doing great stuff, and are far from helpless. Time to sit on your laurels. Take a break for Thanksgiving - seriously! The best thing to do for yourself is exercise, eat well, and get rid of stress. Raise the head of your bed and get good sleep.

Honestly, you don't want to push the doctors away by overwhelming them. They get it, and they understand the research better than you or I do.

Lots of stuff will be public/in the press in the coming weeks, and will make the case easier to present your idea of a symposium at the Hope Center. Give yourself permission to chill for a bit
believe me, I know all about this....
cheer

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

Thanks, cheer, I know I should chill !!! Good advice... things will happen when they happen. I just want to give things a bit of a nudge.

Happy Thanksgiving,

ozark

Hi Ozark,

You can lead a horse to water....

All will come in due time. You've opened the eyes of many notably brilliant researchers and doctors in St. Louis. Now they need to do their research and digest, if they are interested. There's nothing more you can do than let the seeds germinate.

Michelle

I had an interesting and encouraging note from my neurologist's office today after I dropped off my Buffalo MRI disc for them to look at:

"...We were at an MS meeting last night and the speaker was very interested in Zivadinov's [BNAC] work. This is a concept that is totally foreign to the MS etiology way of thinking. It is good to know that early data may be convincing enough to go further with the trials. ..."

I think that she second sentence hits the nail on the head as to what CCSVI is up against and to their credit, it was acknowledged. By admitting that, it begins to open the door for an honest look.

Sawdoggie,

I heard something very similar today about the neuros in NYC.

CCSVI is being noticed, talked about, researched, and, in some cases, swept under the rug. But the doctors know they do not have all the answers, and this is worth investigating.

If they truly care about their patients, they have a professional and moral obligation to educate themselves.