Thursday, June 12, 2014

Publication Bias? Did it work?

Nobody tells you they bought 100 losing lottery tickets or lost big at the casino. Everyone loves a winner, and losers just hunker down under a rock. Likewise, it's rare that anyone writes a blog about how they did a medical procedure that didn't work. The last thing a wounded body needs is wounded pride.

But it's not just individuals. There's a phenomenon called publication bias that the medical science community is becoming increasingly concerned about. When positive research results are reported, but negative results get buried, patients and doctors don't really know whether a drug or medical procedure is worthwhile. The equivalent terminology many of my marketing and journalism peers know is cherry-picking. Clients and people want good news, so that's what editors provide.

Also, there's a certain amount of peer pressure amongst patients to stay positive. Heck, as individuals, patients NEED to stay positive, sometimes to the point of denying the reality of side-effects or disappointing recovery. Just before I went to Chicago for HSCT, a friend asked "What if it doesn't work?" Even though this was a reasonable question, I had to restrain myself from attempting violence (mostly because I would have simply fallen flailing out of my chair). I then calmly explained all the literature reviews that confirm an 85% success rate of the procedure.

So what about me?  Did HSCT work? Well, five months post treatment, I can honestly say that I'm far better than I was before the procedure. The electric wheelchair still sits in my condo unused. The nursing home walker is a clothes drying rack, double vision is gone, and I'm not pissing myself anymore. I'm working more, and occasionally I take my motorcycle for a spin. One time I dropped it due to clumsiness in the parking ramp, but was able to pick it back up again by myself. Not bad for a 472-pound bike.

Still, I'm far from where I want to be. Walking is improving, but I still carry a cane when I go out.  Tripping happens way too easily. Stairs and uneven pavement are a challenge. Running only happens in my dreams. And even though I haven't used it for months, it's too early to donate the wheelchair yet. The specter of a possible relapse still haunts me, and wheelchairs are devilishly hard to get.

Mid-July is my 6-month checkup with Dr. Burt. I expect the exam and the MRI to confirm what I already feel – the aggressive MS attacks have been stopped and I no longer need MS drugs of any kind. I reviewed this article and video today. I'm looking forward to seeing the team who saved my life.  As Dr. Burt checks up on patients like me, he keeps pressing on with his research. If my recovery seems maddeningly slow, I remind myself that his research studies have taken decades to bring HSCT closer to reality for thousands more MS patients. The world and I appreciate his dedication.

Dr. Richard Burt 




The Dr. Richard Burt Story – Lost Memories, Opening Doors
As a Fellow working at Johns Hopkins Hospital in Baltimore, Dr. Richard Burt noticed that the leukemia patients he was helping treat needed to be “re-vaccinated” because the protection from childhood diseases like the measles and mumps was being lost.  The cells impacted by transfusion treatments were losing the “memory” of these original childhood vaccinations.
“Maybe,” thought Dr. Burt, “if we could get bad, diseased cells to lose their memory, we could reprogram them with ‘good’ memories and help patients with autoimmune diseases.” This reprogramming would depend on adult stem cells—tiny building blocks found in the body--if it was going to work.   
He first tried out his idea on animals in the research lab and—it worked!  Not long afterwards the FDA gave its approval for the adult stem cell therapy to be used on people suffering from Multiple Sclerosis, and again, it worked.  Now, 14 years later, Burt and his team of researchers at Northwestern University are using this technique to help treat patients suffering from some 23 different diseases.
“It’s also (adult stem cell therapy) ongoing in centers around the world,” says Dr. Burt.  “So it’s turned out to be very rewarding.  Very rewarding to see people coming back and see how much they’ve improved.  And very rewarding that other centers are doing it.  There’s an old adage that success has many fathers, failures and orphans.  So the very fact that this is now being done around the world--in South America, Asia, Europe, and here in America--it just means that I’ve helped, in some small way, to change this world.”
You’ll get no argument from people like Amy Daniels of Milwaukee.  Amy was diagnosed with an autoimmune disease called systemic scleroderma, an often fatal, always painful disease known as the disease that turns people into stone.  Thanks to Dr. Burt’s groundbreaking adult stem cell treatment, today Amy lives a normal, healthy life with her husband and two daughters.
Or Barry Goudy of Detroit, a man diagnosed with Multiple Sclerosis, an autoimmune disease that attacks the brain and spinal cord. Before his adult stem cell treatment, Barry could barely walk.  Today he is a healthy, active husband and father who coaches hockey and lives life to the fullest. 
Or Jill Rosen, a young woman from Chicago diagnosed with a disease called Systemic Lupus, which negatively impacts many different body systems, including joints, skin, kidneys, blood cells, heart, and lungs.  Jill became a patient of Dr. Burt’s, underwent adult stem cell therapy, and today lives a healthy, happy life, free of all symptoms of Lupus.
With dozens of published studies and numerous accolades from the news media to his credit, Dr. Burt might be tempted to rest on his laurels and enjoy the fruits of success.  But like every researcher, not everything is a success.  Sometimes the symptoms of a condition come back. There are—to put it bluntly—failures along the way.
“You definitely can learn as much from the failures as you do success,” explains Dr. Burt. “Although you never want failure, that’s a part of life.  It’s being able to recognize what’s happened, be honest with it and say, this part didn’t work.  And then ask, why not?  That’s what happens when you open a new door.  For me, that’s what life is about.  It’s opening new doors that in a way can make a small change in this world that helps people.  That’s what I want to continue doing.”
Like every scientific advance, it all starts with an idea.  For Dr. Richard Burt and his team of researchers at Northwestern University, those ideas and the use of adult stem cells are changing the world, one patient at a time.  Visit www.stemcell-immunotherapy.com for more information.
 Additional Links to News Reports concerning Dr. Burt's work:


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