A piece on Dr Dake (and Cheerleader) in The Wall St. Journal

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A piece on Dr Dake (and Cheerleader) in The Wall St. Journal

Postby L » Wed Mar 24, 2010 7:59 pm

http://online.wsj.com/article/SB1000142 ... TopStories

MS Program Halted Amid Controversy
After Patients Push for Experimental Treatment, Doctors Conclude It's Too Risky

Stanford University vascular specialist Michael D. Dake has done pioneering work at the hospital's cardiac-catheterization labs, like fixing certain aortic aneurysms once thought untreatable.
[MS] Stanford Office of Communication & Public Affairs

Michael Dake is at the center of an uproar over a novel MS treatment.

But Dr. Dake's experimenting touched off a furor at the university recently when—based on preliminary research by an Italian surgeon—he inserted metal stents into the internal jugular veins of multiple sclerosis patients. Doctors are generally allowed to adapt for new uses devices, like stents, that have received Food and Drug Administration approval.

In December, Dr. Dake's 40-patient MS stenting program was shut down, according to Stanford officials. A number of patients treated by Dr. Dake had reported improvements in their symptoms following the procedure. However, one patient died of a brain hemorrhage on the way home from treatment and another had to undergo life-saving emergency surgery. Neurologists from Stanford and the University of California, San Francisco, had protested to Stanford medical school officials that the procedure was too untested to be used in people. It's not clear which factors contributed to the program's ending.

Philip A. Pizzo, the Stanford medical school dean, confirmed that after talking to the doctors involved in the matter, "it was decided there would not be further procedures." But he said the vascular theory for MS shows enough promise to be studied further. He says he has asked Stanford doctors, including Dr. Dake and some of his critics, to collaborate on research into whether MS patients have a significantly higher rate of obstructions in their jugular veins than do people without the disease.

The controversy at Stanford illustrates the pressure that groups of patients can bring to bear on medical researchers looking into promising, but untested, cures for major illnesses. Internet chat rooms for MS patients last year were filled with comments about recent research by vascular surgeon Paolo Zamboni of the University of Ferrara, Italy. Dr. Zamboni's findings—that blockages in the jugular veins were causing or worsening MS symptoms—have led to additional research at other universities in the U.S., as well as in Poland and Jordan. Hundreds of patients have signed up for imaging programs to measure jugular-vein blockages at various institutions, including State University of New York-Buffalo, Georgetown University and McMaster University in Canada.

Multiple sclerosis has confounded physicians since it was first described in 1868. In MS, the myelin sheath that insulates nerves disintegrates. It is generally thought of as an autoimmune disease, meaning a patient's body attacks its own cells. Symptoms vary widely but often involve progressive muscle weakness and pain that can flare up unpredictably.

Decades of research have resulted in drugs like beta-interferon and, more recently, Tysabri, which ward off relapses in thousands of patients. But beta-interferon carries flu-like side effects and Tysabri has led to fatal brain disease in rare instances.

Dr. Zamboni, whose wife has MS, studied 65 patients with the disease and found that more than half of them had jugular blockage. That compared with no such blockages in a group of 235 non-MS patients. (Other similar studies have found jugular blockages in roughly 20% of non-MS patients.)

In late 2008, Dr. Zamboni reported his findings in a European medical journal. He theorized that blockages were causing changes in the brain that were triggering MS symptoms. If the veins could be opened, he and doctors at other institutions have suggested in scientific papers that perhaps the symptoms would cease.

He began treating patients with balloon angioplasty to prop open veins. In an interview, Dr. Zamboni says some patients had a "practically complete recovery" while more severely ill ones had "simple improvement in their quality of life."

Joan Beal, a Los Angeles woman whose husband has MS, heard about Dr. Zamboni's findings on the Internet and began hunting for a U.S. doctor who could perform the procedure. Adopting the chat room name Cheerleader, Ms. Beal became just that for Dr. Zamboni's work. Her online postings helped fire up other patients to push for testing and treatment, patients say. Ms. Beal got in touch with a Stanford doctor and author, who referred her husband's case to Dr. Dake.

Dr. Dake says he initially thought the idea was "wacky." He says he changed his mind after reading more about Dr. Zamboni's theory and started seeing MS patients Ms. Beal referred to him. Starting last summer, he used balloon angioplasty and stents to open up veins.

The first to get a stent was Ms. Beal's husband, Jeff Beal, a composer for television and movies. After the procedure, Mr. Beal gave up his daily naps and was far more energetic and alert, his wife says. Some other patients tell similar stories. Randi Cohen says some of her MS symptoms, including fatigue, have significantly improved since Dr. Dake placed a stent in her jugular vein. "I never have to think about pacing myself" since having the stent installed, she says.

Some doctors say the procedure is highly experimental and the improvements reported by patients could simply be a placebo effect, since the course of the MS disease is so unpredictable. Stephen L. Hauser, chairman of neurology at UC, San Francisco, says it's "extremely unlikely" any vascular cause, such as vein blockage, could be the main culprit in MS.

Dr. Dake responds that critical neurologists "don't want to acknowledge that a vascular surgeon in Italy found something that's been right under their noses."

Complications in two cases undermined Dr. Dake's efforts. One patient, Holly Shean from Prescott, Ariz., died of a brain hemorrhage on a flight home after treatment by Dr. Dake in August. Ms. Shean was treated with the blood-thinner Coumadin, which carries a bleeding risk, and had a stent installed in one jugular vein, and later in the other, according to her sister, Trudy Roughgarden. She says Ms. Shean, who used a wheelchair, "felt a little improvement in her fatigue level," after treatment. There is no evidence that the stents contributed to the hemorrhage.

Later, a young scientist from Berkeley, Calif., who was a patient of Dr. Hauser's, read about Dr. Dake's work and had a stent put in, according to interviews with him, Dr. Hauser and Stanford doctors familiar with the case. The stent broke free, floated into the man's heart and had to be removed with emergency surgery, these people say.

Dr. Dake says he had just seen Ms. Shean for a "follow-up visit" before she died on the plane home. He says he can't discuss an individual patient's care, due to rules governing patient confidentiality.

Dr. Hauser complained about Dr. Dake's work to neurology colleagues at Stanford, who also grew concerned that the procedure was overly experimental and potentially dangerous, these doctors say. Stanford MS specialist Lawrence Steinman says Dr. Dake's work "needed more strenuous oversight."

Dr. Dake says he was performing clinical work that he believed would help MS patients. He says such work is necessary before scientists can initiate a research program that would require formal oversight.

After meeting with the Stanford medical dean and Stanford lawyers, Dr. Dake says he stopped stenting MS patients in December. Now, he says, "I'm sort of viewed as the crazy uncle locked up in the woodshed out back."

Write to Thomas M. Burton at tom.burton@wsj.com
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Postby cheerleader » Wed Mar 24, 2010 8:35 pm

sigh. Not the angle I had hoped for when I first brought Dr. Zamboni's research to Stanford...but it is the truth, if only partial.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby QueenMum » Wed Mar 24, 2010 10:01 pm

L, Thanks for posting this.

Cheer,

You are my absolute hero!

I'm glad that you were given the credit you so rightfully deserve for bringing CCSVI into the light. It was hidden from us for far too long.

I am a researcher by nature & I know the long hours & frustration I spent looking for something that made sense in this MS puzzle. YOU FOUND SOMETHING THAT FINALLY MAKES SENSE! It may or may not end up being the ultimate answer to the MS puzzle, but we MS'ers don't have time, as you & Jeff well know.

You found this and put the wheels into motion! I am forever grateful! Thank you!
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Postby lucky125 » Thu Mar 25, 2010 4:20 am

For what it's worth, a little birdie told me that this WSJ reporter was in a snit because GU gave their story to the AP. GU has been working with AP since January, and the WSJ never contacted them until after the story ran.

IMHO, I think that he took a harsh angle to distinguish his story from the relatively well balanced AP article.

Sensationalism sells. Also-rans don't get the glory.

Cheer, you and Dr. Dake deserved better. I know that it is said that no publicity is bad publicity. Maybe that's just true for cheating golfers and pantiless starlets.

You and Dake and all of the Stanford Pioneers are still heros in our book!

Nicole
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby bretzke » Thu Mar 25, 2010 4:20 am

I sent the author of this article an e-mail. Here it is:

Tom-

My daughter has MS, so I'm one of those folks hoping the medical community will come up with some new ideas for more effective treatment.

"The controversy at Stanford illustrates the pressure that groups of patients can bring to bear on medical researchers looking into promising, but untested, cures for major illnesses."

I don't feel your article adequately covers why MS patients are clamoring for new treatments. MS drugs are considered "effective" if they halt disease progression 30% of the time. Tysabri is the most effective drug. With extended use, one out of every 1,000 Tysabri patients contract PML. Outside the U.S., 2 out of every 1,000 contract PML. When Tysabri is discontinued, patients are at risk for IRIS. See link.

http://www.newsinferno.com/archives/18568

Your article glosses over the ineffectiveness/dangers of current MS drugs and focuses on the dangers of an experimental vascular treatment.

Brian Bretzke
Flushing, MI
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Postby bestadmom » Thu Mar 25, 2010 6:38 am

I was interviewed for this story, which felt like it would be ms and ccsvi 101. I hear it was rushed to print and I think the title is negative, although the article is more balanced.

I suspect the AP story trumping the WSJ pushed them to change their tack. Focusing on Stanford and stenting is poor reporting.

Maybe Biogen's stock needs a push. In the end, that's all I took away from the story.
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Re: A piece on Dr Dake (and Cheerleader) in The Wall St. Jou

Postby Donnchadh » Thu Mar 25, 2010 6:55 am

L wrote:http://online.wsj.com/article/SB10001424052748704211704575140313904335240.html?mod=WSJ_hpp_MIDDLTopStories

MS Program Halted Amid Controversy
After Patients Push for Experimental Treatment, Doctors Conclude It's Too Risky

Stanford University vascular specialist Michael D. Dake has done pioneering work at the hospital's cardiac-catheterization labs, like fixing certain aortic aneurysms once thought untreatable.
[MS] Stanford Office of Communication & Public Affairs

Michael Dake is at the center of an uproar over a novel MS treatment.

But Dr. Dake's experimenting touched off a furor at the university recently when—based on preliminary research by an Italian surgeon—he inserted metal stents into the internal jugular veins of multiple sclerosis patients. Doctors are generally allowed to adapt for new uses devices, like stents, that have received Food and Drug Administration approval.

In December, Dr. Dake's 40-patient MS stenting program was shut down, according to Stanford officials. A number of patients treated by Dr. Dake had reported improvements in their symptoms following the procedure. However, one patient died of a brain hemorrhage on the way home from treatment and another had to undergo life-saving emergency surgery. Neurologists from Stanford and the University of California, San Francisco, had protested to Stanford medical school officials that the procedure was too untested to be used in people. It's not clear which factors contributed to the program's ending.

Philip A. Pizzo, the Stanford medical school dean, confirmed that after talking to the doctors involved in the matter, "it was decided there would not be further procedures." But he said the vascular theory for MS shows enough promise to be studied further. He says he has asked Stanford doctors, including Dr. Dake and some of his critics, to collaborate on research into whether MS patients have a significantly higher rate of obstructions in their jugular veins than do people without the disease.

The controversy at Stanford illustrates the pressure that groups of patients can bring to bear on medical researchers looking into promising, but untested, cures for major illnesses. Internet chat rooms for MS patients last year were filled with comments about recent research by vascular surgeon Paolo Zamboni of the University of Ferrara, Italy. Dr. Zamboni's findings—that blockages in the jugular veins were causing or worsening MS symptoms—have led to additional research at other universities in the U.S., as well as in Poland and Jordan. Hundreds of patients have signed up for imaging programs to measure jugular-vein blockages at various institutions, including State University of New York-Buffalo, Georgetown University and McMaster University in Canada.

Multiple sclerosis has confounded physicians since it was first described in 1868. In MS, the myelin sheath that insulates nerves disintegrates. It is generally thought of as an autoimmune disease, meaning a patient's body attacks its own cells. Symptoms vary widely but often involve progressive muscle weakness and pain that can flare up unpredictably.

Decades of research have resulted in drugs like beta-interferon and, more recently, Tysabri, which ward off relapses in thousands of patients. But beta-interferon carries flu-like side effects and Tysabri has led to fatal brain disease in rare instances.

Dr. Zamboni, whose wife has MS, studied 65 patients with the disease and found that more than half of them had jugular blockage. That compared with no such blockages in a group of 235 non-MS patients. (Other similar studies have found jugular blockages in roughly 20% of non-MS patients.)

In late 2008, Dr. Zamboni reported his findings in a European medical journal. He theorized that blockages were causing changes in the brain that were triggering MS symptoms. If the veins could be opened, he and doctors at other institutions have suggested in scientific papers that perhaps the symptoms would cease.

He began treating patients with balloon angioplasty to prop open veins. In an interview, Dr. Zamboni says some patients had a "practically complete recovery" while more severely ill ones had "simple improvement in their quality of life."

Joan Beal, a Los Angeles woman whose husband has MS, heard about Dr. Zamboni's findings on the Internet and began hunting for a U.S. doctor who could perform the procedure. Adopting the chat room name Cheerleader, Ms. Beal became just that for Dr. Zamboni's work. Her online postings helped fire up other patients to push for testing and treatment, patients say. Ms. Beal got in touch with a Stanford doctor and author, who referred her husband's case to Dr. Dake.

Dr. Dake says he initially thought the idea was "wacky." He says he changed his mind after reading more about Dr. Zamboni's theory and started seeing MS patients Ms. Beal referred to him. Starting last summer, he used balloon angioplasty and stents to open up veins.

The first to get a stent was Ms. Beal's husband, Jeff Beal, a composer for television and movies. After the procedure, Mr. Beal gave up his daily naps and was far more energetic and alert, his wife says. Some other patients tell similar stories. Randi Cohen says some of her MS symptoms, including fatigue, have significantly improved since Dr. Dake placed a stent in her jugular vein. "I never have to think about pacing myself" since having the stent installed, she says.

Some doctors say the procedure is highly experimental and the improvements reported by patients could simply be a placebo effect, since the course of the MS disease is so unpredictable. Stephen L. Hauser, chairman of neurology at UC, San Francisco, says it's "extremely unlikely" any vascular cause, such as vein blockage, could be the main culprit in MS.

Dr. Dake responds that critical neurologists "don't want to acknowledge that a vascular surgeon in Italy found something that's been right under their noses."

Complications in two cases undermined Dr. Dake's efforts. One patient, Holly Shean from Prescott, Ariz., died of a brain hemorrhage on a flight home after treatment by Dr. Dake in August. Ms. Shean was treated with the blood-thinner Coumadin, which carries a bleeding risk, and had a stent installed in one jugular vein, and later in the other, according to her sister, Trudy Roughgarden. She says Ms. Shean, who used a wheelchair, "felt a little improvement in her fatigue level," after treatment. There is no evidence that the stents contributed to the hemorrhage.

Later, a young scientist from Berkeley, Calif., who was a patient of Dr. Hauser's, read about Dr. Dake's work and had a stent put in, according to interviews with him, Dr. Hauser and Stanford doctors familiar with the case. The stent broke free, floated into the man's heart and had to be removed with emergency surgery, these people say.

Dr. Dake says he had just seen Ms. Shean for a "follow-up visit" before she died on the plane home. He says he can't discuss an individual patient's care, due to rules governing patient confidentiality.

Dr. Hauser complained about Dr. Dake's work to neurology colleagues at Stanford, who also grew concerned that the procedure was overly experimental and potentially dangerous, these doctors say. Stanford MS specialist Lawrence Steinman says Dr. Dake's work "needed more strenuous oversight."

Dr. Dake says he was performing clinical work that he believed would help MS patients. He says such work is necessary before scientists can initiate a research program that would require formal oversight.

After meeting with the Stanford medical dean and Stanford lawyers, Dr. Dake says he stopped stenting MS patients in December. Now, he says, "I'm sort of viewed as the crazy uncle locked up in the woodshed out back."

Write to Thomas M. Burton at tom.burton@wsj.com


So, Dr. Dake is presently not doing any more liberation procedures?

Donnchadh
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Postby kc » Thu Mar 25, 2010 8:32 am

I want Dr. Dake to be my crazy uncle in the shed in my backyard as long as he has his surgeon's playset with him.

That one made me crack right up. He must have a good sense of humor.

kc :twisted:
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WSJ article

Postby LSITC » Thu Mar 25, 2010 8:46 am

This is my email to the author:
Mr Burton

I do not know you and mercifully you do not know me.
That was a stinking article to write based on half truths and rumours.
Do you have MS? Do you have any concept of what life is like with MS? Do you have any disease which plays havoc with your life on a daily basis? Do you ever wake up in the morning wondering if you will be able to stand up straight, if all your limbs will work properly, if you will have energy to go out that day? I guess you don't because if you did you would not have written that article.

Unlike journos, doctors like Paulo Zamboni, Michael Dake, Robert Zivadonov etc want to HELP people and they are doing just that with this much needed ongoing research into CCSVI. And just for the record, would you like to try the disease modifying drugs - let me think, daily self-injection, unknown and unpredictable side-effects, sore injection sites? Hmmmm?

Oh by the way I have just recovered from cancer and took whatever treatment was I offered and I would like to be offered the chance of non-chemical dependent treatment to recover from MS i.e. CCSVI

A very irritated MS sufferer from across the Pond

This is his reply:

Ms. Stein,
I am very sensitive to patients' feelings, and am uncertain why you would assume otherwise. So I regret that you found my article stinking and based on half-truths and rumors.
Sincerely,
Tom Burton

SMUG OR WHAT????
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Postby cheerleader » Thu Mar 25, 2010 9:16 am

I spent many, many hours speaking and writing back and forth with Mr. Burton.
Here is my response to the article:

link
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby PCakes » Thu Mar 25, 2010 9:24 am

e-mail sent to Thomas Burton this morning...

Mr Burton,

You had a chance to help us. You chose not to. Why? Your article manipulated the words of a trusting intelligent and unwavering MS advocate. You had a chance to be part of something that will change the lives of millions forever. I am sorry for you and your need to 'sell'.

Hundred's of thousands living with this monster multiplied by family and friends will now turn their backs on your words
.
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Postby magoo » Thu Mar 25, 2010 9:48 am

I think Dr. Dake is taking some pretty unfair licks. He's an amazing, caring, brilliant doctor. His only motive is to help and to further this research. I am so happy he took the chance to treat us.
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 Sharon » Thu Mar 25, 2010 10:20 am

The title of the article is negative therefore it grabs attention. Unfortunately, the reader is then looking for the negatives within the story and not the positives which I note below:

#1 - Tom Burton is the first reporter to actually call and have a conversation with a member of Holly Shean's family. What he wrote is the truth -- there was no evidence the stent caused the hemorrage.

#2 - Dr. D. was able to speak out publicly -
Dr. Dake says he was performing clinical work that he believed would help MS patients. He says such work is necessary before scientists can initiate a research program that would require formal oversight


#3 - Burton acknowledges the research -
Dr. Zamboni's findings—that blockages in the jugular veins were causing or worsening MS symptoms—have led to additional research at other universities in the U.S., as well as in Poland and Jordan. Hundreds of patients have signed up for imaging programs to measure jugular-vein blockages at various institutions, including State University of New York-Buffalo, Georgetown University and McMaster University in Canada.


#4 - Dr. Dake responds to the neurologists
Dr. Dake responds that critical neurologists "don't want to acknowledge that a vascular surgeon in Italy found something that's been right under their noses."


I was interviewed by Burton as were others here on TIMS. It is unfortunate that he misunderstood and misquoted Cheer.

In our excitement about CCSVI, we forget that the study and research data is not conclusive enough yet for the medical community to accept. We are getting there --- one year ago we only had Zamboni's research -- look at where we are now.

Sharon
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Postby PCakes » Thu Mar 25, 2010 10:37 am

Here is the response to my e-mail...

Dear Whoever You are,

You are wrong if you think this article was motivated by a need to “sell.” We try very hard to present thoughtfully balanced insights and reporting, and that is what we plan to do in the future. We would be very grateful for any leads about new information we should write about. And I certainly hope patients don’t turn their backs on what we say, because it’s their interests that I and we at the WSJ hold uppermost.

Sincerely,

Tom Burton

Thomas M. Burton

The Wall Street Journal/Staff Reporter

1 S. Wacker Dr., 21st floor

Chicago, Illinois 60606

(312) 750-4123
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Postby patientx » Thu Mar 25, 2010 11:05 am

Sharon wrote:I was interviewed by Burton as were others here on TIMS. It is unfortunate that he misunderstood and misquoted Cheer.


Where is the misquote?
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