Our NMSS and a puzzling review of CCSVI

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Our NMSS and a puzzling review of CCSVI

Postby magoo » Tue Jan 05, 2010 8:03 am

I have a problem with Dr. John Reichert, Executive Vice President of Research and Clinical Programs for the NMSS, and his negatively slanted view of CCSVI! Could he be anymore discouraging? (see his remarks below)
Present the facts, great, that's your job. I don't understand how his opinions should have made it into this article without the opinions of someone who has had the procedure and feels the benefits. It's very negative. If he is bold enough to say he believes we are all experiencing placebo effect, then he should be bold enough to actually speak to the patients and hear their side. What a jerk!
Am I overreacting?

Medpage Today ~ "Radical MS Theory Stirs Interest"
Excerpts from this article quoting John Reichert:

"Most experts regard it as a long shot" that needs to be studied, said John Richert, MD, executive vice president for research and clinical programs at the National Multiple Sclerosis Society.

While the results seem promising, they fall well short of proof, according to the MS society's Richert. "This is something that requires a well-controlled, blinded prospective study," he said.

One danger is that patients may jump the gun, Richert said. "There are a number of patients who may be expecting that they can just go to a vascular surgeon and get this done," he said.

"Our feeling is that this is an experimental procedure and that it should be undertaken by people with MS only as part of a formal clinical trial," Richert added.

Richert added that the results of Zamboni's surgical trial -- while good science -- aren't enough yet to overturn the existing paradigm.

Among other things, Richert said, it's possible that the apparent benefit was a long-lasting placebo effect.

In clinical trials with a placebo, he noted "reproducibly and consistently, the group on placebo does better on the trial than they did prior to entering the trial."

Zamboni and colleagues measured MS symptoms in patients before and after the procedure, rather than comparing surgical and control groups.

The changes that they saw, Richert said, are similar to those "that we tend to see in placebo groups in major drug trials."

He added that the MS society is "anticipating" proposals for a randomized trial of the surgery by its February grant deadline. The Canadian MS society said earlier this week that it will support such research if a proposal is made.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby magoo » Tue Jan 05, 2010 8:06 am

Maybe we should let him know how much we feel he is doing for us??

National Multiple Sclerosis Society. 733 Third Avenue. New York, NY 10017. Phone: (212) 476-0423 (212) 476-0423 Fax: (212) 476-0485. E-mail: john.richert@nmss.org
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby ozarkcanoer » Tue Jan 05, 2010 8:57 am

magoo,

You are not overreacting at all. I don't understand how someone whose salary is paid mostly by people with MS can be so condescending to us. I have already informed the NMSS that I will not support an MS walk this year because of their attitude toward CCSVI. Instead I am donating to the BNAC study. I wonder how much money the NMSS will lose this year because of this ?

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Re: Our NMSS and a puzzling review of CCSVI

Postby frodo » Tue Jan 05, 2010 10:38 am

What we need is a CCSVI society (maybe the relationship with MS is not proved, but existence of CCSVI has been)

At some point, NMSS will find their affiliates and supporters changing sides, and then they will realize that they should pay attention to this research.

By the way, they forget to comment that there is no valid model at this moment about how MS develops and all the patients of the Zamboni study showed venous malfunction. I do not know why they focus on the uncontrolled surgery results when the important theoretical study is the one with the ultrasounds. I really cannot help thinking they have some hidden interest.
Last edited by frodo on Tue Jan 05, 2010 11:09 am, edited 1 time in total.
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Postby magoo » Tue Jan 05, 2010 11:06 am

I wrote Reichert a long email expressing my dismay. I hope he reads it and comments back.
I also just got a letter from the NMSS asking me for donations......into the garbage it went!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby SandyK » Tue Jan 05, 2010 11:09 am

I just emailed Reichert...what a tool!

Hi. I have had MS for 16 years and for most of those years I was supportive of your organization. I was a Team Captain for your walks and a political advocate for your agenda. Now, when I need your support for a positive outlook about CCSVI you have let me down. Instead of saying the effects of the surgery are all just because of placebo you could have met with these people and witnessed their new lives.

I am no longer one of your biggest fans. You don't want to find anything close to a cure. You just want to keep me doped up and placated. I'm done with you.
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Postby magoo » Tue Jan 05, 2010 11:19 am

:P Yea Sandy!
Maybe if he hears from enough of us he'll do something? I offered my history and my "opinions" to him. I hope he calls to talk, lol!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby JoyIsMyStrength » Tue Jan 05, 2010 11:55 am

Unbelievable, magoo. You know, I have been mostly neutral towards the NMSS. I have not been one who has really resented the lovey-dovey relationship between NMSS and the drug companies because, after all, if not for the drug companies' support who knows if they would have enough budget to really do some good, despite money from the walks.

But this guy is reinforcing all the ill will a lot of MS'ers feel towards the NMSS because they fear a huge slant towards the opinions of their "bread and butter" donors. There has been a lot of hatred and venom spewed against them in other forums, and I stay clear of those because they are non-productive. Granted, the drug companies probably do play a huge role in their treatment recommendations but since I don't know for sure and since I don't sit on their boards and listen to their discussions, I've tried to reserve judgment... until now.

My point is, he sounds like someone who fears losing the support of the big money drug companies that help pay his salary. Non-objective at best. I think this new discovery is backing the NMSS into a corner. If they would be real and listen, they might be surprised at the outpouring of support from the folks who really matter: the patients!

I have never donated to the NMSS because I have never been sure that they were not being pressured and influenced about all of our options. This makes me even more convinced. Why does everything have to be such a fight? Why should these ideas be shot down so quickly when clearly there is a real effect on real people?

Maybe in time we can organize our own walk, call it the CCSVI walk, only it will be comprised of people like you who have improved dramatically and in that case we could change it to a run!

Pam
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Postby magoo » Tue Jan 05, 2010 12:12 pm

There are numerous articles in which Reichert comments on several MS drugs. He is very "encouraged" in most of these pieces. A very different tone is used even when the drugs kill people or have dangerous side effects.

Here's his BIO in case you're interested:
John R. Richert, MD; Dr. Richert is Executive Vice President for Research & Clinical Programs at the National Multiple Sclerosis Society. He received his BA from Cornell University and MD from the University of Rochester. After his residency in Neurology at the Mayo Clinic, he was an MS Society-sponsored post-doctoral fellow in the Myelin Chemistry Section at NIH (NIMH) and then spent two additional years in the Neuroimmunology Branch at NIH (NINDS). He then joined the faculty in the Neurology Department at Georgetown University, where he founded their MS Clinic. He was at Georgetown for 25 years, during the last seven of which he served as Chair of the Department of Microbiology and Immunology. His research interests included abnormal gene expression in the immune systems of people with MS and clinical trials of new therapeutic agents in MS. He also served on the Board of Directors of Georgetown University Hospital. He joined the NMSS in his present position in the spring of 2005.

Here are a few quotes I found interesting.

Estriol:
Dr. John R. Richert, Executive Vice President of Research and Clinical Programs at the National MS Society, stated, "We're encouraged that the National MS Society's funding of the original pilot trial of estriol, which emerged from targeted research on gender differences in MS, has led to this new trial. We are pleased that Pipex and Dr. Voskuhl are committed to advancing the development of this novel approach which could potentially lead to an affordable, oral disease-modifying therapy for this debilitating disease."

Tysabri:
These reports raise concern and they underscore the importance of carefully tracking patients on powerful medications like Tysabri," said Dr. John R. Richert, executive vice president of research and clinical programs at the National MS Society. "This drug is relatively new to the market, and as experience grows we are bound to learn more about its benefits as well as possible adverse events," Dr. Richert added.
I'd be disappointed if the restrictions are so onerous that in practicality, it does not get used, Dr. Richert said. That could happen if, for example, the paperwork required of physicians is so extensive that they cannot afford the time to do it. Or the population for whom it is earmarked is so restricted that few people would be eligible to use it. I would be surprised if either of those things happened.
What's most important, Dr. Richert suggests, is for people with MS to have a choice in the process.

Alemtuzumab:
Hauser is chief of neurology at the University of California, San Francisco Medical Center.

"Taken together, the toxic effects associated with alemtuzumab considerably dampen any enthusiasm for its routine use in patients with multiple sclerosis until more is known about its long-term safety and sustained efficacy," he writes.

John Richert, MD, of the National Multiple Sclerosis Society (NMSS), tells WebMD that it is increasingly clear that aggressive treatment early in the course of disease is a better strategy than waiting until MS progresses.

Drugs, drugs, drugs...............keep em' coming and he seems very happy.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby JoyIsMyStrength » Tue Jan 05, 2010 12:14 pm

Wow Rhonda. I'll say it backwards. Wow.
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Re: Our NMSS and a puzzling review of CCSVI

Postby magoo » Tue Jan 05, 2010 12:23 pm

frodo wrote:What we need is a CCSVI society (maybe the relationship with MS is not proved, but existence of CCSVI has been)
By the way, they forget to comment that there is no valid model at this moment about how MS develops and all the patients of the Zamboni study showed venous malfunction. I do not know why they focus on the uncontrolled surgery results when the important theoretical study is the one with the ultrasounds. I really cannot help thinking they have some hidden interest.


Yes, I too was upset by the way he presented the information. Thank you for stating it so clearly:)
Love the CCSVI Society idea!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby magoo » Tue Jan 05, 2010 12:27 pm

Joy,
I am not big on thinking the worst of everyone involved either. I don't like to place groups into a good or bad category. But this guy is under my skin and I don't trust him.
I would RUN in the CCSVI walk!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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They will kill this if they can..

Postby katie45 » Tue Jan 05, 2010 2:31 pm

My email to him From: "kathy"
To: <john.richert@nmss.org>



Subject: Please stop living off of and promoting the pain and suffering of 'ms' patients


God will provide for you too, especially when one does right by humankind. The cause of ms has never been proven. The dangers of blocked veins from whatever the cause has and needs to be fixed. Your labels 'ms' should not even be a consideration in long approved angioplasty procedures.

kathy
Last edited by katie45 on Tue Jan 05, 2010 3:55 pm, edited 1 time in total.
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response to ms society

Postby mangio » Tue Jan 05, 2010 3:10 pm

Magoo,
I have also decided to cancel sending funds or participating in MS
Walk in lieu of the
response you have elucidated.

By the way the Koch family in America, (McDonald's founders) give
generously to medical research because of a sister that had MS.

The Seagram family in Canada same,
Rona conglomerate in Canada
and J.K. Rowling in Scotland (mother)
The Jayman family in Calgary etc., etc.

This situation will not change until they hear from you all.....

Mangio
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Postby lucky125 » Tue Jan 05, 2010 6:40 pm

Thank you for starting this thread about Richert. I was shocked when I read his comments, too. It is one thing to be cautiously optimistic, or just plain cautious, but to suggest that wise, brave patients are just suckers of the placebo effect?!? Please!

I have always been a big supporter of the Society. I volunteer my time. I will continue to be grateful for all of the wonderful things my local chapter does to support patients, like providing cleaning and childcare stipends. But I am sorry to say that Richert is giving it a bad name, and alienating it's base.
Last edited by lucky125 on Thu Jan 21, 2010 3:49 pm, edited 1 time in total.
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