This Is MS Multiple Sclerosis Community: Knowledge & Support

Arcee,

Thank you for reminding me about Russ Carnahan !! Here I am in St Louis going, duh !!!! A good friend of my husband worked for Russ Carnahan's mother when she took over as senator from Missouri when her husband (Russ's father) died. Now that you have given me the heads up (where has my head been ? LOL) I just need to figure out how to get his attention.

ozarkcanoer

I'm staying far away from Sen.Leiberman of CT!

I just sent a letter to Russ Carnahan via his official website. This is the letter except that we had to fiddle with the link to the CTV W5 documentary :

-----------------------------------

Dear Representative Carnahan,

I am a person with Multiple Sclerosis and I live in your Congressional District. I want to thank you for your support of Multiple Sclerosis research.

Over the past year, some exciting new research from Italy has sparked the interest among people with MS not just in Italy, but from all over the world. The research is called CCSVI or Chronic Cerebro-Spinal Venous Insufficiency. Scientists and doctors in the USA are currently running or are in the process of setting up, clinical studies to test Dr Paolo Zamboni's theory on a possible cause of MS and a promising new treatment. There is ongoing research at SUNY-Buffalo, at Stanford University, and at Wayne State University in Detroit. In addition, our friends in Canada, particulary at the University of British Columbia, are also starting clinical studies and trials of the CCSVI theory,

For more information, please watch this documentary that was produced by the Canadian CTV W5 staff. The documentary was first aired at the end of November 2009. There is much more information on the web about CCSVI. Just Google : CCSVI.

The documentary :

W5 DOCUMENTARY NEWS STORY ON DR ZAMBONI AND THE LIBERATION PROCEDURE


The people who are currently doing the research are looking for funding from the general community of people with MS. My husband and I have made a donation to the Buffalo study. However funding this research more fully will be difficult since there will be no interest in this by any pharmaceutical company.

Any help you can give us to support this research would be most welcome.

Thank you,

Jill Nolan

Jill, great letter! I hope you don't mind if we use parts of it in our outreach.

Michelle

bestadmom, Take my letter, please !!!!! LOLOL

That's great. The more out reach to these folks, the better. And who knows, maybe one day we'll be able to build a CCSVI/MS Dedicated Imaging Center in their district

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

Leonard--great essay.

I think contacting Congressional delegations is a great idea. I calculated some very, very rough potential health care cost savings that might be achieved via investing in CCSVI research, ala an amendment to health care reform legislation.

A $1 billion dollar research investment to study CCSVI in people with MS could potentially save $20-$40 billion dollars annually in U.S. health care costs.

Potential cost savings estimate based on the following sources:

Costs and Quality of Life in Multiple Sclerosis (2004 data; cost $47,000 per person per year x 400,000 individuals = $18.8 billion; 1994 data indicated $34,000 per person annually; conservative annual cost of $6.8 billion; and total lifetime cost per case of $2.2 million. “Virtually all persons with MS had health insurance, mostly Medicare/Medicaid.”

Neurodegenerative Market Forecast to 2013

Overall it seems to me like a relatively small investment with the potential for exponential rewards to say nothing of the individuals and their families whose lives would be richly rewarded if the research pans out.

Arcee

That would be for starters if the cost savings really panned out. Unfortunately, I'm not aware that any amendment to the U.S. health care legislation has been proposed for CCSVI research. I pulled the $1 billion investment out of a hat.

Take care all

Sharon

I have sent letters to one of my senators (Patty Murray) about helping with funding and research. She has a family member who has MS and has always responded to me in the past. Hopefully, I will hear from her soon.

Good job, SandyK !!!!

For anyone who never has used email to contact your Representative or Senators, the place to start is with the Member Web Site Listing by State for U.S. Representatives and U.S. Senators Home.

If you are not sure who your representative is or what district you live in, you can use the handy form to identify your representative.

Thank you for the warm welcome and your reactions. I know this is not really for me but let me give you one further humble suggestion if I may.

Zamboni expects that over the next 10 years, 10,000 papers will appear on this subject. I am sure he is right that a lot of research will be done on the precise mechanisms that cause MS, on the role of iron on the vessel walls, on how it all leads to the scars, on whether and how venous insuffiency could affect other neuro-degenerative diseases etc etc. And I am sure a lot of "research" will be done on the very question how on earth things could have gone so terribly wrong, and what lessons we may draw for the future and for other health issues.

There is always this reflex to call for more research, here things on this side of the ocean are not different from the US. Further research is certainly important, but at this stage it is the patients' interests that should prevail above all. Therefore, in stead of starting all over again, we must call on doctors to see, to read, to assess, to appreciate, to understand etc what Zamboni has already done [I was told that they are very bad at reading… so there is probably some truth in this http://healthblog.ctv.ca/post/Iron-Mult ... eflex.aspx ].

I fully concur with Sharon about the huge financial benefits for the society (in Europe the figures will be of the same order), not to mention the well being of the patients themselves (which is difficult to express as a pecuniary value but if I may give it a figure with the experience of an MS patient, it is at least as big as the direct financial implication).

In this context, if you consider writing to your politicians, it would occur to me that you should perhaps elaborate a bit more on the dimension of the patients' well being at this stage of the process and the big consequential benefits of a more healthy society. It is in this context that I referred to the notion of governance in my previous message (or may be I should have used the word gouvernance).

I keep following from Europe with greatest interest how all this will unfold, unravel and erupt in the USA.
Best wishes to all!

Spot on Leonard!

Yes, let us let the research take its course, but let us have our veins fixed in the interim. Between Dake, Zamboni, Simka, a couple in the UK and France, we have much evidence of decreased disability, more so than otherwise. I have read that when you have a study cohort of 100, the results are extrapolative.

And what is the financial impact?

_________________
My name is not really Johnson. MSed up since 1993

Well spoken; I also thought "ecosystem" not to be appropriate; as it refer to natural environment's matters ( http://en.wikipedia.org/wiki/Ecosystem ) - Governance is much more suitable.

But many ideas are strong.

Thanks and cheers;

Algis

Just imagine being 3 months ahead.....results of Buffelo will be there, the VU Amsterdam results will be there, UBC results will be there, probably intensive research in Italy, maybe a trial at Stanford,...many more 'liberated' by Dr. Simka.....

Man, can anybody give time a little push forward?

Rob

I hope that CCSVI converts do not promise too much from this procedure. At the current time it is logical to say that people with MS exhibit venous insufficiency when tested. For pw RRMS and SPMS it reasonable to treat this problem using angioplasty (or stents if angioplasty is not successful). Then stop the selling message. Wait until there are research studies to say what happens to pwMS before saying this is a treatment or cure.
By theorising on how the blockages are formed or the role of iron in MS lesions you distract from the simple fact - pwMS exhibit venous insufficiency, which is treatable with reasonable risk.
Please, please, please stick with the simple facts. Try to get people tested and treated and record their observations. With 1000 observations of no more relapses or some improvements the theory gains a compelling scientific case for study.
By promising too much and pushing theories about the cause of MS, CCSVI converts actually damage the message they are trying to put across.

Mark Walker - Oxford, England
(MarkW not Mark W)