2 posts tagged “Duke University”

The record on research: A chat with Duke’s Dr. Rick Bedlack

Posted March 7th, 2017 by

“This is the fastest enrolling trial in ALS history.”

 

A brightly-colored blazer and the determination to make a difference for ALS patients are two of Dr. Rick Bedlack’s defining characteristics. Dr. Bedlack is a tenured associate professor of Medicine/Neurology at Duke University. He’s also the director of the Duke ALS Clinic that’s partnering with PatientsLikeMe in the current Lunasin study. We recently spoke with him about his background with ALS and the ins and outs of the study.

He saw his first patient with ALS in the late 1990s during his residency at Duke.  He says, “I remember being amazed by the person’s history and neurological exam findings, intrigued by the mysteries of why this was happening, and horrified when I heard my attending physician say ‘you have 2-3 years. There is nothing we can do. Go and get your affairs in order.’” Driving home that day, he decided to build a program for people with ALS that would give them options for living the best possible life with the disease and for participating in research that would stimulate some hope.

Fast forward to March of 2016 when the Lunasin study started. What’s Lunasin and why does it matter to the ALS community? Lunasin is a peptide first extracted from soybeans, which has several potential mechanisms by which it could help a person with ALS. “I first heard about it in a video that my ALSUntangled team was asked to review. In this, a man named Mike McDuff reported that he had ALS, started taking a Lunasin-containing supplement regimen, and unexpectedly experienced dramatic improvements in his speech and swallowing,” says Rick.

He found Mike McDuff and validated his ALS reversal. “One possible explanation for his ALS reversal is that the Lunasin regimen really works,” he says. “Other possible explanations are that Mr. McDuff has an undiagnosed ALS-mimic syndrome, or that his body is somehow naturally ‘resistant’ to this disease. I am testing all these hypotheses in my ALS Reversals program.”

The Lunasin study is a clinical trial of the exact same Lunasin-containing regimen that Mike McDuff took when he experienced his ALS reversal. Because they’re looking for the largest signal ever in an ALS trial, they’ve been able to incorporate some unusual design features into this trial:

  • The inclusion criteria are very broad. There are no cutoffs related to disease duration or breathing function.
  • There are no placebos. All 50 people in the trial will get the real treatments.
  • There are very few in-person visits. Most of the visits are virtual, with participants logging into PatientsLikeMe to enter measurements we teach them to make.
  • The results of the study are available in real time. Anyone can go onto PatientsLikeMe and type in “Lunasin Duke Virtual Trial” and see what participants are saying is happening to them.

“I appreciate the frustration many people with ALS have expressed about the way most of our trials are designed and I wanted to do something different to help them,” says Dr. Bedlack. “It took longer than I expected to get the study open. Constipation is much more common on the Lunasin regimen than I expected, and drop outs have been higher than I hoped thus far.”

The IRB-approved protocol is published so that anyone who wants to try the Lunasin regimen outside the trial can do so using the exact same products and doses, and even record their same outcome measures on PatientsLikeMe.

So, what’s the end game of this study? Dr. Bedlack comments, “I hope to find a way to reverse ALS or at least slow it down. If that does not happen, then I hope I can at least show that this unusual design enrolls more quickly and retains study participants better than a more traditional ALS trial. This is the fastest enrolling trial in ALS history.”

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Achieving wellness: An interview on mental health with Dr. Murali Doraiswamy

Posted January 14th, 2014 by

Murali Doraiswamy is a Professor of Psychiatry and Behavioral Sciences at Duke University where he is also a member of the Duke Institute for Brain Sciences. He also serves as an advisor to government agencies and businesses. Dr Doraiswamy is the brain health advisor for Men’s Health magazine and serves on the World Economic Forum’s Global Agenda Council for Neuroscience and Behavior.

What’s his take on PatientsLikeMe? What does he see as emerging mental health treatments? And what does he wish more people knew about mental illness? We recently had the chance to chat with him about all that and more. Check out what he had to say in our interview.

 

What interests you about studying and learning more about mental illness?

To me it’s one of the most important public health challenges for the 21st century – the mind affects every aspect of our body, our physical wellbeing and our family and social relationships.

According to the World Health Organization (WHO), a staggering 450 million people currently suffer from mental health conditions, making them one of the leading causes of poor health and loss of productivity worldwide (some 175 million years lost to disability). Mental illnesses, such as depression, also shorten one’s lifespan.

Rates of conditions, such as ADHD and PTSD are skyrocketing in the US and many newer conditions such as “Internet Gaming Disorder” are emerging. Many of these conditions have their roots in childhood or teenage years.

I am also interested in how culture, environment and brain interact in shaping our behavior. In particular, I am interested in how we may be able to apply insights from behavioral and neuroscience studies to tackle some of the major problems in society.

There is a huge upside to society if we can prioritize and implement low cost scalable public health strategies to treat and prevent these conditions.

As a doctor, what is something you wish more people knew about mental illnesses? 

Clearly drug therapy helps many people but it’s not a cure and may not work at all for many people. We need to do a better job integrating psychological and social interventions into our care models – to truly help people thrive and enjoy a full life.

The manifestation of mental health conditions is often dependent on the environment. For example, it would be a lot easier for someone to quit smoking if they lived today in New York city, which has banned all public smoking, than if they lived in New York fifty years ago when smoking was seen as trendy and acceptable even in hospitals. Emerging studies show that people living in densely packaged cities have higher arousal response to a given stimulus than people living in rural areas or those who have recently gone for a walk in nature. That’s why Central Park in New York may have a bigger effect on mental health than all of the hospitals in Manhattan.

Our diagnostic criteria are subjective and may not be accurate. The same person can often be given different diagnoses by different doctors and treated differently. Psychiatry is not immune to fads. For example, there has been a 40-fold rise in the rates of childhood bipolar disorder in the US over the past two decades – but is this real?

Mental illness can raise the risk for new medical problems, such as obesity and memory loss, and worsen the outcomes for pre-existing heart disease, diabetes, or cancer.

Any thoughts on what’s ahead in terms of new treatment advances?

Here are my top five.

      1. Protect the developing brain. The biggest mental health gains will come from simple public health preventive measures applied during pregnancy and childhood to protect the developing brains (such as childhood nutrition, supportive and secure family environment, reducing neglect, better education, reducing poverty, minimizing  exposure to war and conflict) as well as increasing access to basic physical and mental health care for the poor.
      2. Creating a Nurturing Environment.  A supportive social network makes us view stressors less as a threat. For example, a hug or the presence of a loved one not only reduces our perception of pain but it does so even at the nerve cell level! A lifelong study of 268 Harvard sophomores showed that the single most important predictor of physical and mental wellbeing fifty years later was not any of the things a doctor measures routinely such as cholesterol – it was close relationships. Likewise new studies are showing that spending time in nature (what I call as vitamin N) rejuvenates the brain’s memory centers and lowers our stress response – the reverse of what happens when you live in dense cities.
      3. Positive Psychology. We underestimate the effects that practicing positive activities (such as being grateful and optimistic, counting one’s blessings and performing acts of kindness) has on mood and well-being. But consider this – if a person gets 20 minutes of positive emotions from one act of kindness, he may get energized to go to the gym or to a poetry workshop where in turn he may make a good friend – a positive upwards cycle. For those seeking more information I recommend my favorite weekly blog Positive Prescription by Dr Samantha Boardman. I learn more from it than from all medical journals combined!
      4. Physical activity. A series of studies done at Duke has demonstrated that aerobic exercise is as effective as a prescription antidepressant for treating mild depression. Also in a review of over 100 studies of yoga, we found it to be promising for a range of mental symptoms including issues with sleep, anxiety, attention and mood. Exercise affects more than 20 chemicals in the brain in a positive way and may stimulate the release of endorphins and also nerve growth factors (which are like fertilizers for the brain). It may also protect your brain against age-related memory loss. It’s an old stand-by but new information coming out every day reinforces it’s effectiveness.
      5. Wellness enhancing technologies. Mobile apps, sensors, and online programs will increasingly fill in the gaps that a doctor may not be able to fill. Mood GymTM an online interactive web program – based on cognitive behavior therapy – helps people prevent depression and handle stressful situations such as relationship break-ups. It also teaches relaxation and meditation techniques. Positive Activity JackpotTM an augmented reality tool that locates pleasant and positive activities, using your GPS location. PTSD CoachTM, an app to help people learn and manage symptoms after a trauma. LiveHappyTM, a happiness boosting app based on the principles of positive psychology. MoodAgentTM, an app that seems to know what kind of music you are in the mood for – often better than you. And last but not least, sites such as PatientsLikeMe are going to play an increasing role in empowering those with illnesses.

I am not suggesting these recommendations are necessarily suitable for everyone and you may need to consult your doctor.

How do you think online communities like PatientsLikeMe can positively impact people living with a mental illness? 

PatientsLikeMe, while not being a substitute for medical care, brings the power of the internet to help such individuals better manage their own illness – education, greater insight into their own condition, online community, reduction of stigma, a sense of community – which can lead to positive benefits even when they are not online.

Often peer advice – tips from another patient – may feel more real than advice given by a doctor (since the other person has actually gone through the same condition).

As more people sign up for communities like PatientsLikeMe, this data will become a major tool for research and gaining early insights into which treatments work and which don’t.

Obviously these pros have to be balanced with the need for patient privacy and ensuring patients who reveal their stories don’t suffer any discrimination. But if used wisely PatientsLikeMe can be a powerful tool to achieve wellness.