This Is MS Multiple Sclerosis Knowledge & Support Community

N.Y. Times, Aug 9, 2010

#17. June 28, 2010 8:39 pm Link

Wow, people grow more stupid with each passing day. I understand the desperation of medically ignorant patients with lowered cognitive reserves, but I do not understand the quackery of medical professionals willing to whore themselves out in the name of money. These patients need to be protected from themselves, not coddled, appeased, and entered into an experimental surgical procedure for which no data is being generated.

I’m a doctor who isn’t desperate to fill my schedule in order to keep the expensive interventional-radiology machine running. Still, this article makes me ashamed of my profession.
— Dave

But what *is* your profession, Dave? hee-hawery? Maybe you should take more quacking lessons.

Thank you for being so very understanding, Dave. Do the initials FOAD ring any bells, Dave?

From later in the page:

Re: For those identifying themselves as physicians,

I’d be curious to know what kind of physicians they are. Also if they are going to identify themselves as physicians, in other words holding themselves out as authorities, wouldn’t it be nice if they would identify themselves? Are they afraid of something or are they just not what/who they say they are?
— Jan

It does sound like he's implying he's an IR, but if he's so positive CCSVI is not true, why not identify himself as such?

And his language isn't exactly professional is it? I can understand if doctors disagree with each other, but I seriously doubt a qualified IR with reservations about CCSVI would voice his doubts with such crude language, and I don't believe any decent doctor would ridicule patients with "lowered cognitive reserves".

As we all know, not ALL MS patients have "lowered cognitive reserves", and even those of us who do, can still think! (even if it takes a bit longer...)

Does "Dave" really think Dr. Zamboni would allow the Liberation precedure to be performed on his own wife if he wasn't certain of its scientific validity?

And "no data being generated"? What he hasn't heard of Buffalo? Of Dr. Zamboni's own results? Of the NY symposium?

"Dave" hardly counts as a credible source of info imho! lol

Bizarre. But Selkie's quite right, it doesn't sound like a doctor to me. Perhaps he's posting to newspapers after a few drinks? Some people do that from time to time.

What a self-serving, condescending SOB.

I try not to allow myself to become too angry at those that are a waste of DNA, such as Dave, but it is hard to deal with two slaps in the face at once without some bristling effect.

Medically ignorant?
Lowered cognitive reserves?

Most of us have read more on the issue than the "doctors" that easily dismiss the theory and the treatment. And while I may have "lowered cognitive reserves", I am not THAT brain damaged. None of us are.

The very thought that the sick must rely on their doctors for every thought and bit of information is the very reason boards like this must continue to survive and thrive. I am a grown woman, Dave- I can read, interpret, question and analyze as well or better than you can even with my "lowered cognitive reserves".

Wait until I am liberated, Dave...then you will see just how "lowered" my cognitive reserves are. In the meantime, I wish he would just do the world a favor and STFU.

Well, it's not just Dave, I looked up the NYTimes article & its comments - so here's the link - but folks, don't stress out about the stupid people out there - as frustrating as it is. But it is interesting what was said by the president of the NMSS, Joyce Nelson -

"The MS Society does some very good work and is an excellent source of information, especially for the newly diagnosed.

However I find this statement jaw-dropping:

“Joyce Nelson, the president of the Multiple Sclerosis Society in the United States, said, “I wasn’t aware how thin the veneer was and how close to the surface the frustration was.” ”

MS is an incurable, crippling, devastating thief that has shattered my life. With all due respect, if Ms. Nelson is not aware of how frustrated, indeed desperate, we are, she has no business being the president of an organization that is supposed to be a group of “passionate individuals who want to do something about MS now” (from the National MS Society website).
— Marie "

Here's the url to the NYTimes article & comments (the article itself contains a link to the full article on the Liberation Treatment, the link below is an excerpt of the original article plus comments...)

http://well.blogs.nytimes.com/2010/06/2 ... sclerosis/


*************

I remember seeing that quote and being astonished myself.

It's true- you don't get MS until you get MS. Not even in the societies.

#
216. July 26, 2010 8:15 pm Link

The definitive website for CCSVI information is now up and running: http://www.ccsvi.org. Created by CCSVI Alliance, a nonprofit organization founded by MS patients who have been treated for CCSVI (and one spouse), it is the go-to place for the latest on CCSVI, whether you’re a patient, health professional, caregiver, reporter, student…. whatever. A fabulous resource. (And no, I have no affiliation with it, aside from being a grateful user.)
— Eileen Gavin McKenna
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217. August 10, 2010 12:48 pm Link

I would advise anybody who has been told they have ‘MS’ to seek and get the Liberation procedure, paid for by many insurance providers. It is a congenital, vascular disease. It shares symptoms (and virtually identical procedures for treatment, in some cases) with other diseases, which are also covered. Interventional Radiologists are gearing up to treat CCSVI. There are books being written to assist them. Vascular surgeons are doing the procedure, too, lead by one of the finest, Dr. Mehta, of New York State. Doctor Sclafani, Bronx, New York, NY, has come out of retirement and resigned his post at a hospital (he is still Chairman of Radiology at SUNY) to help these people.

Drs. Dake of Stanford University and Zivadinov of the University of Buffalo, are neurologists, who with many others have been developing this work to perfect the procedure and our knowledge of its effects.

Perhaps this patient population is too large for this country to afford in these tough economic times (though there are also arguments about false economy).

The government of Kuwait, to where many of our Petro-Dollars flow, is in the process of Liberating its 6000 citizens who need it. I hope we are remembering the 10 Americans who die every day with this disease, and the one Canadian.
— Chris Sullivan
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218. August 10, 2010 2:27 pm Link

Where do you guys get your meds that cheap? Drug co’s are worried about losing $90K per patient bottom line. My meds are $7500 a month for Betaseron. I WILL have the treatment done. Give me some of that placebo!
— Paul Krwawecz

1eye wrote:#
216. July 26, 2010 8:15 pm Link

The definitive website for CCSVI information is now up and running: http://www.ccsvi.org. Created by CCSVI Alliance, a nonprofit organization founded by MS patients who have been treated for CCSVI (and one spouse), it is the go-to place for the latest on CCSVI, whether you’re a patient, health professional, caregiver, reporter, student…. whatever. A fabulous resource. (And no, I have no affiliation with it, aside from being a grateful user.)
— Eileen Gavin McKenna
#
217. August 10, 2010 12:48 pm Link

I would advise anybody who has been told they have ‘MS’ to seek and get the Liberation procedure, paid for by many insurance providers. It is a congenital, vascular disease. It shares symptoms (and virtually identical procedures for treatment, in some cases) with other diseases, which are also covered. Interventional Radiologists are gearing up to treat CCSVI. There are books being written to assist them. Vascular surgeons are doing the procedure, too, lead by one of the finest, Dr. Mehta, of New York State. Doctor Sclafani, Bronx, New York, NY, has come out of retirement and resigned his post at a hospital (he is still Chairman of Radiology at SUNY) to help these people.

Drs. Dake of Stanford University and Zivadinov of the University of Buffalo, are neurologists, who with many others have been developing this work to perfect the procedure and our knowledge of its effects.

Perhaps this patient population is too large for this country to afford in these tough economic times (though there are also arguments about false economy).

The government of Kuwait, to where many of our Petro-Dollars flow, is in the process of Liberating its 6000 citizens who need it. I hope we are remembering the 10 Americans who die every day with this disease, and the one Canadian.
— Chris Sullivan
#
218. August 10, 2010 2:27 pm Link

Where do you guys get your meds that cheap? Drug co’s are worried about losing $90K per patient bottom line. My meds are $7500 a month for Betaseron. I WILL have the treatment done. Give me some of that placebo!
— Paul Krwawecz

Dr. Dake is not a neurologist fyi.

It seems that some people have interest creating FUD about the CCSVI facts. Maybe because their egos or maybe because some hidden situations.

They dare to confuse the patients because they presume the legal cost is zero. For example, they publish papers about angiographies with no vascular specialist because they presume that nobody will sue them.

But the fact is that there are patients hearing them which will suffer consequences. Even if MS and CCSVI are unrelated they are persuading people with vascular problems to not treat their problems. In the better case this is against moral. In the worst case, they will produce permanent disabilities and even some deaths among their readers.

This has to be stopped and legal actions are the only way to shut this people up. In Canada there was a group taken legal actions against MS patients discrimination. This kind of action should be extended against false or non-accurate publications. Even in medical journals. Even better if the whole journal can be sued.

If anybody knows about some organization arranging a lawsuit against this, please tell me.