MS Researcher Slams CCSVI

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

Postby Lyon » Tue Oct 26, 2010 1:58 pm

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Postby fogdweller » Tue Oct 26, 2010 2:06 pm

Lyon wrote:
thornyrose76 wrote:Is there one neuro out there that does have an open mind about CCSVI? :cry: :x :evil: 8O
Not to be snotty but what is considered an open mind?

Of course one underfunded man (Zamboni) can't provide a water tight case at this early point but the burden of providing an argument that seems interesting and sensible enough to draw the interest of the rest of the medical community is up to him and other pro CCSVI people and he/they obviously haven't succeeded in that yet.


True, but lack of proof it is true is not the same as proof it is not true... because it isn't proven does not seem to be a good reason to refuse to fund studies checking out whether it is true or not, and that is one of the things the Dr. said. I sympathize that there have been alot of off the wall theories proposed, and a specialist in the MS area is justified in being skeptical and cautious, but not dismissive in the way this article was.

Of course, everyone has an off day, and Cece says he is one of the good guys, normally.
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Postby Cece » Tue Oct 26, 2010 2:21 pm

His bio:
Randall T. Schapiro, MD
President, The Schapiro Multiple Sclerosis Advisory Group
Eagle, CO

... Following a short stint as a faculty member and director of the MS Clinic at the University of Minnesota he founded the first comprehensive MS Center in 1977, The Fairview MS Center, which was renamed, The Schapiro Center for Multiple Sclerosis at the Minneapolis Clinic of Neurology in 2004. In 2009 he retired from private practice to consult and advise about topics related to MS. He currently is the president of The Schapiro Multiple Sclerosis Advisory Group based in Eagle, CO. He was the first elected president of the Consortium of MS Centers, an organization which he helped found. He has participated in the development of the Heuga Center, a wellness center for MS based in Colorado and was given their “Can Do” award. Dr. Schapiro was awarded a Life Time Achievement Award by the Consortium of MS Centers in 2007. He has been elected to the National MS Society Hall of Fame and has served on numerous advisory committees for them including the Medical Advisory Board. He also serves on the International MS Society’s Medical Advisory Board. He served five years on the National Board of the National MS Society as well as serving his 32 years on the local board of the NMSS. He has lectured and written extensively on all topics associated with MS Management nationally and internationally. While he has participated in numerous research studies, he is best known for his use of humor to teach sensitive topics in both educational and patient management settings.

http://cmscfoundation.org/about-the-fou ... l-schapiro

But he is clearly no fan of CCSVI.
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Postby bigfoot14 » Tue Oct 26, 2010 2:23 pm

My wife's neuro is pretty open minded....He quit offering the DMD's when he realized that they weren't working for her & encouraged her to continue meditation and vitimen suppliments.....

His viewpoint on CCSVI is "get tested, we'll review the results, just don't do anything crazy like get a stent"

IMO most general practice neuros are much more open to CCSVI
than neuros who are "MS specialists" and have turf and money to lose
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Postby Lyon » Tue Oct 26, 2010 2:36 pm

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Postby Trish317 » Tue Oct 26, 2010 4:27 pm

Cece wrote:He's retired from private practice now, but up until last year Dr. Schapiro was the head of the clinic I go to here in MN. I've always had respect for him, he has accomplished a lot. I guess I will excuse him on this one. It's hard to change one's way of thinking. I doubt he has seriously looked into the vascular research on CCSVI and MS, it's kneejerk dismissal, but he's still one of the good guys, just not one of our good guys.


Dr. Schapiro was my darling man's neurologist when he lived in Minneapolis. When he asked him about LDN, he said he wouldn't prescribe it until clinical trials were done, and he said it was very expensive. I understood his feeling about clinical trials but he was very wrong about it being expensive.
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Postby Johnson » Tue Oct 26, 2010 4:51 pm

Is there one neuro out there that does have an open mind about CCSVI?


Maybe they do not accept CCSVI because of the knowledge they have accumulated though years of schooling,private practice, and research? It would have been nice if he would of laid out some specific reasons...


But what is that knowledge? Certainly, they are experts in the observation of the "MS" disease process; whether a prescription drug might help (though; do they help?), which prescription? Some will prescribe drugs that have potentially deadly side effects, but they don't know whether the drug will cause the side effects, nor how severely.

From my own experience, neurologists have been next to useless to me. I have always believed in "doctor, heal thyself", and that has worked for me. But there are things that I cannot do, such as image myself, or perform even minor surgerical procedures on myself (and I have never convinced a veterinarian). I told neuros and ENTs for years that there was a blockage in my neck, I thought it was my Eustachian tubes, but I was bounced back and forth as I slowly went deaf. It was "MS" (or rather, CCSVI) - ENT was right. When I complained of dizziness and fatigue during my last neuro appt., I was prescribed Valium - because the neuro thinks that he knows more than ENT and he thinks it's Meniére's (it's not). He acknowledged, with a smirk, that the Valium might exacerbate my fatigue. The script is on my fridge since last April. It makes me laugh as I stagger and swoon past it.

I have nothing against neurologists, nor any doctor, but the only knowledge they have of MS, which is pertinent to me, is that they do not know what causes MS. They do not know how to stop progression. They do not know how to cure it. They do not know that they still have an important role to play in the investigation of "MS" as having a venous vector (and no one wants to look at bacteria as causative in CCSVI). There are good doctors and bad doctors. Incurious doctors are bad doctors, as far as I am concerned There are good patients and bad patients. I am not a good patient (because of my knowledge and curiosity), and I have encountered many bad doctors. In my own experience, neurologists have done nothing to help me. I like the guy I see once in a while as a person, but the Valium thing? ... Talk about a defeated neurologist. Poor guy.

My own feeling is that we better educate ourselves than admire, or declaim any doctor. We live in a world of mediocrity and compartmentalized disciplines. It's all just an illusion of order and proficiency and expertise.
My name is not really Johnson. MSed up since 1993
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Postby MrSuccess » Tue Oct 26, 2010 5:19 pm

thanks for providing the Bio , Cece .

make no doubt about it ..... Shapiro knows MS.

In addition to being a piss poor stand up comic ..... Shapiro needs to work on his shtick ...... making fun of someones name ..... is lame .

Now that Shapiro has made his move ..... he's fair game now ..... as is our beloved Dr. Freedman .... :twisted:

Welcome to the Jungle ..... Dr. Shapiro :twisted:

Poor old Shapiro can't be blamed for his long held beliefs and opinions .
Shapiro pre-dates MRI's and the information age - The Internet .

Poor old Shapiro must pine for the day's when his patients were at his mercy for their health information ......

Using text books older than dirt ..... Shapiro made a damn fine living providing unproven theories ..... to treat a medical condition that continues to baffle the most educated medical minds ... out there.

The smart ones say .... I'm not sure ...... let's look at this problem from another view ..... let's look at everything ..... what do you think about this ?

Those like Shapiro ....... are convinced they have the correct solutions .

Man ...... what an arrogant prick .


yes .... it takes one to know one :wink:




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Postby Trish317 » Tue Oct 26, 2010 6:07 pm

MrSuccess wrote:thanks for providing the Bio , Cece .

make no doubt about it ..... Shapiro knows MS.

In addition to being a piss poor stand up comic ..... Shapiro needs to work on his shtick ...... making fun of someones name ..... is lame .

Now that Shapiro has made his move ..... he's fair game now ..... as is our beloved Dr. Freedman .... :twisted:

Welcome to the Jungle ..... Dr. Shapiro :twisted:

Poor old Shapiro can't be blamed for his long held beliefs and opinions .
Shapiro pre-dates MRI's and the information age - The Internet .

Poor old Shapiro must pine for the day's when his patients were at his mercy for their health information ......

Using text books older than dirt ..... Shapiro made a damn fine living providing unproven theories ..... to treat a medical condition that continues to baffle the most educated medical minds ... out there.

The smart ones say .... I'm not sure ...... let's look at this problem from another view ..... let's look at everything ..... what do you think about this ?

Those like Shapiro ....... are convinced they have the correct solutions .

Man ...... what an arrogant prick .


yes .... it takes one to know one :wink:




Mr. Success


I have no doubt that Dr. Schapiro knows neurology. He wouldn't have had the career in medicine that he had, if he didn't. But I remember one thing that my darling man told me after one of his appointments. He was explaining to the doctor the things that he was experiencing and the loss that he was feeling. He told me that the doctor patted him on the hand and told him to be happy with the things he was still able to do.

I suppose the doctor meant well. It was no consolation to my darling man. When he told me, it just broke my heart a little more for what he's going through.
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Postby dunkempt » Tue Oct 26, 2010 7:37 pm

Maybe they do not accept CCSVI because of the knowledge they have accumulated though years of schooling,private practice, and research?


Maybe. In the case of my neuro - possibly the same as ThornyRose's - although he has publicly denigrated CCSVI on more than one occasion, he has *not* in fact even read the key papers, nor has he bothered to, say, check to see if the "charlatans" he thinks are doing the treatment have ever published their results before suggesting they are frauds. And it's easy to be right arguing against your own imaginary straw man.

These things aren't conjecture: he hasn't even bothered to engage with the theory for 20 minutes. (He is happy to spend more than that much time running it down, though.) When you hear people (my neuro, Freedman, et al) making scornful jokes rather than discuss the content of a paper it's also a good clue they are not engaging with the content.

OTOH, I know another neuro who is quite clearly a skeptic not a believer, but he is also actually following the research and listening to patients, and is interested in hearing more results.

I can't complain about that, even though my non-professional opinion is that he's quite wrong.

-d
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Postby MrSuccess » Tue Oct 26, 2010 7:41 pm

trish317 - we read of that ''attitude'' from time to time .... here at TIMS.

take heart ..... Dinosaurs like Shapiro are going out of style.

In the olden day's ...... the likes of Shapiro held all the cards . Now .... with the help of the good old Internet ...... one person in Italy can ask questions and exchange information ..... with someone in China.

Leading edge doctor's ..... ie .... Dr. Scalafani ..... are taking advantage of all the technology at their disposal ...... and reaching out to the masses.

[ spelling fanatiks will be halfing a field day with my lak of spell cheque ]

Poor old Shapiro has clearly missed the boat . The '' Internets '' are no doubt to blame for all Shapiro's angst .

MS medication ..... methods of discovery ...... and old-new ideas ..... have all contributed to the demise of the old school doctor and their old school methods ...

I say ... Adios Shapiro .... don't let the door hit your ass on your way out ....... :idea:



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Postby Cece » Tue Oct 26, 2010 8:28 pm

Dunkempt, very well said, I couldn't agree more.

I know a bunch of IRs who are engaging with the content though, all of whom actually possess the dopplers and catheters and treatment abilities.

But they need neurologists to partner with and this sort of attitude is too pervasive.

Trish317 wrote:When he asked him about LDN, he said he wouldn't prescribe it until clinical trials were done, and he said it was very expensive.

The anecote about the hand-patting seems like it may have been an attempt at consolation that missed. This one bothered me more, it seems as if he was being deliberately misleading. It fits with him being opposed to alternative therapies, though.
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Postby sbr487 » Tue Oct 26, 2010 8:41 pm

thornyrose76 wrote:Is there one neuro out there that does have an open mind about CCSVI? :cry: :x :evil: 8O


Dr. Steinman is one such example. I had read about his warning on Tsyabri and it was not surprising that he finds CCSVI interesting. And has plans to study it ... though its another issue that he might never be able to do it because of lack of funds. I am sure there are many such doctors who definitely have an open mind on CCSVI ...
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby Brainteaser » Tue Oct 26, 2010 9:49 pm

Am I reading this correctly?

Dr Shapiro says that there were major studies to disprove bee venom treatment, which from my understanding, has been a treatment very few if any recognised medical specialists have ever supported.....

'Bee Venom Therapy (BVT) or Apitherapy, is one such homeopathic therapy that was widely supported as an MS cure several years ago. Major studies by the American Academy of Neurology, with findings published in 2005 concluded that there was no improvement of disability and fatigue in patients with relapsing multiple sclerosis and did not improve quality of life.'

Yet for CCSVI which seems to have some significant level of positive interest by 100+ well-credentialed medical specialists around the world, he says that there should be no studies..........

'Dr. Schapiro went on to say that he was strongly opposed to funding upcoming clinical trials of CCSVI by either the government or the MS Society and that “the money invested in these trials could certainly be put to better use where MS research is concerned.”

At the very least he should clarify himself.

But from my experience with most fervent skeptics, it is probably simply a matter of a perceived threat to an existing power base.

Phil

PS. Zamboni - hockey rink!
Perhaps Shapiro should confine himself to utterances such as 'I don't know' and 'Walking backwards to happiness'!
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Postby sbr487 » Wed Oct 27, 2010 12:46 am

I say ... Adios Shapiro .... don't let the door hit your ass on your way out .......


Perhaps Shapiro should confine himself to utterances such as 'I don't know' and 'Walking backwards to happiness'!


that was really funny :D
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
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