The Telegraph, BBC hyped an unpublished tremor study

Since I have Parkinson’s disease,  I try to keep up with the latest research on the progressive neurological disorder,  at least to the best of my ability considering the last biology class I took was more than three decades ago in high school.  Often, though, I find the coverage lacking.   Recent articles in the U.K.’s  Telegraph newspaper and on the BBC’s website on the use of ultrasound to treat people with uncontrollable shaking called Essential Tremor are a case in point.  The disease if often confused with Parkinson’s though it’s roughly eight times as common.

The Telegraph’s story on the use of ultrasound tugs on the reader’s heart in the first paragraph:

Parkinson’s patients and others suffering debilitating tremors could be cured of their shaking using a new ultrasound machine which targets their brain cells.

The BBC is more circumspect though it includes the quote from Prof Wladyslaw Gedroyc, a consultant radiologist at Imperial College Healthcare NHS Trust:

“This is a game changer for patients with these movement disorders because we can cure them with a treatment which is completely non-invasive and we don’t have to give unpleasant drugs.”

To be sure, the patient highlighted in both stories, a 52-year-old painter named Selwyn Lucas, is clearly benefitting from the procedure. Unfortunately, scientists have yet to prove that ultrasound can “cure” essential tremor, meaning that permanently reverse its course.  In a press release issued last year, the FDA’s Dr. Carlos Pena urged patients to keep their expectations in check:

 “As with other treatments for essential tremor, this new device is not a cure but could help patients enjoy a better quality of life.

Indeed, I find it strange that U.K.’s National Health Service is touting a scientific research that apparently hasn’t been published in a peer-reviewed medical journal.   Moreover, the size of the study featuring where Lucas is a patient is small, with 20 participants, so it’s premature to be speaking of “cures.”   Scientists in the U.S., which are conducting clinical trials on ultrasound therapy on tremors, also have found side effects including walking difficulties and numbness in the hands and feet.   It’s strange that neither the Telegraph nor the BBC discussed potential pitfalls of the treatment.

Don’t get me wrong,  I hope that ultrasound therapy succeeds because  I may need it at some point.  It is a less invasive and potentially cheaper alternative to treatments such as Deep Brain Stimulation, which involves putting electrodes in the brain.   It’s important to remember, however, that “potential cures” often fail to live up to their potential and flame out in the regulatory process.

 

 

 

 

 

 

 

 

 

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Yale Daily News corrects erroneous report of a #Parkinson’s disease cure

Well, my public shaming seems to have worked.  The Yale Daily News has updated  the erroneous story it published last week indicating that a cure for Parkinson’s disease had been found.   Here’s what the correction says:

A previous version of this article used a quote from one of the study’s lead authors stating that an alternative cure for Parkinson’s had been found. In fact, the results are only preliminary, and a cure for the disease has not yet been discovered.

Let’s hope that Levent Mutlo, the post-doc who made the cure claim, has learned to align his brain with his mouth, and that author of the article George Saussy, will show at least some skepticism the next time someone says something that is too good to be true.

Some people with Parkinson’s are desperate to find a cure for the degenerative neurological disease.    That’s what makes stories like one published in the Yale Daily News especially worrisome because it provides them with a false sense of hope.   Sadly, this isn’t the first time the media has over-hyped a research study and won’t be the last.

A closer look at Yale Daily News’ bogus report on a #Parkinson’s disease cure

One of the reasons I got into journalism was to avoid hard subjects like biology.  Of course, that science phobia came to haunt me a few years ago when I got diagnosed with Parkinson’s disease.   Since then, I have tried to keep up with the latest research on the progressive neurological disease.  That’s why the Yale Daily News’  Oct. 9 report titled “Study Hints at Cure for Parkinson’s” caught my eye.

The story discusses research published in Journal of Cellular and Molecular Medicine that showed that transplanting stem cells into the brains of monkeys with Parkinson’s managed to alleviate some of their symptoms.   This is good news since these stem cells weren’t embryonic, which mostly come from in vitro fertilization procedures and arouse the anger of people opposed to abortion who equate destroying embryos with killing babies.    Unfortunately, the promise of adult uterine stem cells as the basis of Parkinson’s therapy wasn’t exciting enough for the editors of the publication that bills itself as “The Oldest College Daily.”   (Here’s a link to the paper if you are interested. One of the scientists I consulted who read the paper said the results weren’t statistically significance.)

If the misleading headline wasn’t enough to raise unrealistic expectations in the minds of Parkinson’s patients, the quote from post doc researcher Levent Mutlo proclaiming: “We found an alternative, easy way to cure Parkinson’s” would surely do it.  I had to read the sentence a few times to make sure that no one had messed with my meds.   A few thoughts came to mind.    First, Mutlo must be getting with offers from prospective financial backers.    If the drug companies are charging $90,000 for a hepatitis C treatment, I wonder what they could get for a Parkinson’s cure. It may not reap the $1.9 billion in annual sales that Viagra earned last year but it wouldn’t be too shabby either.    The other thing that struck me as strange about that quote was that it was in the fourth paragraph of the story.  I guess they don’t teach the concept of “burying the lead” at Yale.

Then I decided to actually try to read the study and came across the word “preliminary”, which proved this research though interesting hasn’t found the cure for the disease that ails me an about 1 million other Americans.  Indeed, no one that I know of in the Parkinson’s world views stems cells from whatever source as a “cure.”   They might help address some of the motor symptoms associated with the disease such as gait disturbance, which is a fancy of describing like myself who walk like a zombie.   In fact, my zombie walk is so good that I am going to dress up as “Zombie Daddy” for Halloween.

What I am saying here isn’t top secret or new and could have been found by the Yale Daily News via Google.  In fact, scientists have been doing stem cell research on Parkinson’s disease for years.  These efforts have recently gained traction because as a recent Wall Street Journal article noted:

 Several patients with Parkinson’s disease who received brain-tissue transplants from fetuses in the early 1990s have needed little or no medicine to treat the disease ever since—an outcome virtually unheard of in the course of the disease.

Exciting? You bet.  But these scientists don’t claim they have cured Parkinson’s disease either.  In fact, as the article noted “Some patients developed involuntary movements that could be severe.”   If someone offered me a chance to participate in this research, I would  gladly do so knowing the risks.   But the problem is that it takes years, sometimes decades to bring a drug to market.

What’s particularly annoying about the Yale story is how it gave Parkinson’s suffers a false sense of hope.  One of the commenters even said “OMGOSH! I want to be part of the clinical trials.”  Sadly, any human trials on stem cell-based Parkinson’s therapies are years away from happening if they ever happen at all.    Nothing is crueller to someone with an incurable, progressive disease than to fill them with unrealistic expectations.

This article pissed me off so much that I wrote a response to the Yale Daily News and heard nothing.  My comment on the article got deleted.  Undaunted, I emailed Dr. Hugh Taylor, who is the designated contact for the study, and was delighted that he took the time to reply.    His response is reprinted below.

Dear Johnathan,
I agree. I have already spoken to Levent. He is a student who has done good work but has no experience with the press.
I spent a considerable amount of my time with this YDN reporter detailing the limitations of the study and would never use the word cure.
I was surprised that the press contacted a second author rather than the first author or the designated contact author of the study. In the future I will prepare all for this event.
Levent is young, enthusiastic and optimistic.
I will also speak to the YDN reporter again.
Hugh
Just remember folks, the Internet isn’t a vast store of ideas.  At best it’s a 7-Eleven.  What your mother told you when you were a kid applies today: Don’t believe everything that you read.