18 posts from September, 2011

A Peek at the September Newsletter for Members

Posted September 30th, 2011 by

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our August edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today.


What type of exercise – and how much – is right for your condition?

We all know exercise is a good thing, but if you’re managing a disease, it can be a little trickier to find the right regimen. How much exercise? What type? How often? The answers, of course, are different for everyone, and it can take time and patience if you don’t know where to look. Why not start with patients like you?

A Patient's Walking Treatment Evaluation History

Patients with many different conditions have shared what’s worked and what hasn’t for more than 150 types of exercise. Some of the most common ones include walking, yoga, stretching, aquatic therapy and swimming. How do other members rate these exercises? You can find out in the treatment evaluations. As one member writes, “I have felt less need for pain meds, and I have slept better on the nights I walk.”

Whether you’ve found your ideal routine or are still searching, you may want to become part of an “online buddy system.” For example, subscribe to one of the forum threads on exercise listed below in the “Join the Conversation” section. Can’t find one for your room? Start your own. Let’s get moving together!

Kate, Emma, Liz, Jeanette & Sharry

Kate"" Emma"" Jeanette"" Sharry""


Check out what other patients are saying about exercise in the forum. Then jump in with your own questions and answers. (New members are welcome anytime!)

Need help with something on the site?  Visit the Technical Help Using PatientsLikeMe Room.


Thanks for your continued feedback about improving the site, Here are our top functionality enhancements for September.

There are so many ways to stay connected at PatientsLikeMe – which can be a blessing and a curse sometimes. Recently, we made some major changes to our email and notification system. In addition to fixing reported bugs, we’ve made it easier for you to turn email notifications on/off with the click of a mouse. We’ve also improved the unsubscribe process. Visit your Email Settings page to update your preferences.

Your New Email Settings Page

Wish you could avoid certain forum threads? Consider it done with our new “Hide Topic” button (pictured below). They’re not gone forever if you change your mind, however. Simply go to the “My Hidden Topics” page to find them.

Hide Topics by Clicking This Button

If you’re tired of having to log in when you click a link in a PatientsLikeMe email – such as this monthly newsletter – you’re going to love hearing that you can now log in automatically via verified email. To turn on this time-saving feature, go to your Account Settings page and select “Yes” as shown below.

Click Yes and You'll Never Have to Log In to Click Links in a PatientsLikeMe Email Again

Finally, we’ve introduced a new outcome score for patients with an autism spectrum disorder (ASD) called the Autism Treatment Evaluation Checklist (ATEC). You’ll see that the ATEC score is now displayed in the “puzzle piece” icon in all ASD patient nuggets, as illustrated below.

Autism Patient Nugget with ATEC Score

Be of Good Heart Today

Posted September 29th, 2011 by

Today, September 29th, is World Heart Day. Sponsored by the World Heart Federation, this annual event was started in 2000 to raise awareness about heart disease and stroke, the world’s leading cause of death with more than 17.1 million lives lost each year. All around the globe, activities such as talks, screenings, walks, concerts and sporting events have been organized for today.

World Heart Day 2011

One of the main goals of World Heart Day is to educate the public about the fact that at least 80% of premature deaths from heart disease and stroke could be avoided. All it takes is controlling the three main risk factors: tobacco use, unhealthy diets and physical inactivity. Beyond those, another related risk factor is high cholesterol, which was the subject of yesterday’s blog post.

Here at PatientsLikeMe, a number of patients report cardiovascular conditions as well as conditions that put them at high risk for heart disease or stroke. They include:

If you’ve been diagnosed with one of these conditions, join our growing community and connect with patients like you today. Have a loved one who’s at risk? Educate yourself about the warning signs of a heart attack or stroke. According to the World Heart Federation, over 70 percent of all cardiac and breathing emergencies occur in the home when a family member is present and available to help a victim.

How’s Your HDL and LDL?

Posted September 28th, 2011 by

September is National Cholesterol Education Month, which means it’s a good time to find out your total cholesterol levels as well as your HDL (“good” cholesterol) and LDL (“bad” cholesterol) levels. Have you had them checked in the last five years?

Cholesterol Levels Can Be Tested by Having Blood Work Done at Your Doctor's Office

More than 102 million Americans have a total cholesterol level at or above 200 mg/dL, which is beyond healthy levels, and more than 35 million of those individuals have levels of 240 mg/dL or higher, which puts them at high risk of heart disease. That’s a major concern given that heart disease is the leading cause of death in the United States.

Fortunately, high cholesterol can be lowered with lifestyle changes – including losing weight, eating healthier, exercising and quitting smoking – as well as medication. But to start turning things around, you have to know there’s a problem. Even children and adolescents can have high cholesterol, especially if they are overweight.

Here at PatientsLikeMe, 335 patients report hypercholesterolemia (high cholesterol) while 235 patients report hyperlipidemia (high lipids in the blood, including cholesterol and triglycerides.) Across both conditions, some of the top reported medications include Simvastatin, Atorvastatin, Pravastatin and Rosovastatin.

If you’re unsure of your cholesterol levels, talk to your doctor at your next visit. And if you’re already aware that your levels are high, reach out to other patients like you today at PatientsLikeMe. Changing your lifestyle isn’t easy, but it’s easier when you have a community to lean on for support, answers and advice.

How Privacy Impacts Personalized Medicine

Posted September 27th, 2011 by

We are standing on the edge of a new information age, and this new information age is going to clash with our existing understanding of concepts such as privacy and how we think about healthcare data and what should be done with it.” Jamie Heywood

PatientsLikeMe Chairman Jamie Heywood recently traveled to Zurich, Switzerland, to speak at the Personalized Medicine Symposium, sponsored by the Life Science Zurich Business Network. Tune in below for a video recap that features Jamie’s comments about rethinking the concept of privacy in order to personalize as well as democratize healthcare. “Humans are collectivists,” he argues. “We want to help each other. It’s intrinsic to human nature.”

Look for Jamie’s comments to begin around the 3:01 mark.

See the PatientsLikeMeInMotion Program in Action

Posted September 23rd, 2011 by

We’ve shared a lot of great photos on the blog lately of run/walk teams sponsored by PatientsLikeMeInMotion this year. Now you can learn more about this dynamic program in a more dynamic format with our new PatientsLikeInMotion video. Find out how to get involved, what sponsorship entails and how much PatientsLikeMe has donated towards our sponsored teams’ fundraising efforts since the program’s inception.

Ready to get out there and raise awareness and funds for your condition? Let us support you every step of the way. Sign up for PatientsLikeMeInMotion today.


Posted September 22nd, 2011 by



PatientsLikeMe Releases First in Series of Reports on Real-World Patient Experiences with Top Multiple Sclerosis Drugs

In the first report of a series on Multiple Sclerosis (MS) disease modifying therapiestysabri(DMTs), PatientsLikeMe reveals that nearly two-thirds (64%) of patients who report discontinuing the use of Tysabri (n=323) did not cite “doctor’s advice” as a reason. “Side effects too severe” and “did not seem to work” topped the other reasons cited by patients. The report goes on to reveal that patients stop Tysabri due to side effect severity less frequently than patients who discontinue other DMTs for that same reason.  The PatientsLikeMe report is the first of five in a series focusing on how patients are experiencing and evaluating DMTs in the real world.

“People with MS and other conditions have become much more than just consumers of prescription medications, they are now customers who wield a high level of influence on treatment decisions,” says David S. Williams III, Chief Marketing Officer at PatientsLikeMe. “The goal is maximizing health outcomes for patients.  Clinicians can use the real-world insights from this report to collaborate better with patients in treatment planning while manufacturers can use them to better design adherence programs to reduce inappropriate discontinuation.”

This 40-page report — titled “Does Tysabri patient experience in the real world justify its value?” — analyzes the experiences of more than 12,000 MS patients who are taking, or have taken, Tysabri or other DMTs.  In the report, PatientsLikeMe evaluates:

  • Tysabri Price vs. Value: Is this drug appropriately priced given real-world evidence regarding efficacy and side effects?
  • The Patient Voice in Treatment Discussions: Of the 4,083 patient conversations mentioning one or more MS DMTs from January-June this year, Tysabri commanded 27% share of patient voice.  What percentage of Tysabri-related discussions were focused on progressive multifocal leukoencephalopathy (PML) or JCV (John Cunningham virus) antibodies?
  • Efficacy and Side Effects: More than half (55%) of the 500 Multiple Sclerosis patients who have taken and evaluated Tysabri experienced “moderate” to “major” efficacy compared to interferon therapies which average 33% moderate to major efficacy.

The report is available for purchase at http://partners.patientslikeme.com/tysabri; a free abstract is available for download.

Note to Editor:  All data cited from this report must be sourced as originating from PatientsLikeMe®.

About PatientsLikeMe

PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on Twitter and the PatientsLikeMe blog.]

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PatientsLikeMe member lscanlon

Do You Know Someone with Dementia?

Posted September 21st, 2011 by

Today, September 21st, is World Alzheimer’s Day. For this annual event, Alzheimer’s associations around the globe are coming together to raise awareness about Alzheimer’s disease, which affects an estimated 36 million people worldwide. This degenerative brain syndrome impacts memory, thinking, behavior and emotion. Eventually, those affected require assistance with all aspects of daily life.

"Faces of Dementia," the 2011 World Alzheimer's Day Theme

The theme of this year’s event is “Faces of Dementia,” and it is designed to show how this incurable disease knows no social, economic, ethnic or geographic boundaries. In addition, it pays tribute to those who work tirelessly to support and care for people with dementia. The need for such care will only increase as the world’s population ages. By 2050, the global prevalence of Alzheimer’s is expected to triple (115 million).

Here at PatientsLikeMe, we have both patients (or caregivers of patients) who have reported Alzheimer’s disease, as well as Early Onset Dementia, which is the term used when Alzheimer’s is diagnosed before the age of 65. If someone you love has exhibited signs of dementia – including memory loss, word-fishing, personality changes and difficulty performing routine tasks – talk to a healthcare professional as soon as possible.

Photo of the Week: Hamming It Up for MS Awareness

Posted September 19th, 2011 by

Sometimes you have to hog the spotlight to bring attention to your condition – in this case, multiple sclerosis. Please meet PatientsLikeMeInMotion team leader Pjohns, who was supported by family and friends as well as “Hammy Hog,” the mascot of the Rockford Icehogs hockey team, at a 2011 Walk MS event in Northwest Illinois.

Pjohns's Walk MS Team with "Hammy Hog" of the Rockford Icehogs

Congrats to Pjohns and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for your condition. We’re honored to support you every step of the way.  For more PatientsLikeMeInMotion team photos, check out our new Flickr slideshow.

Organizing a team for this fall?  Sign up for PatientsLikeMeInMotion today.

PatientsLikeMeOnCall: Monitoring Health Hazards with Modern Tools

Posted September 16th, 2011 by

Welcome to the fifth installment of our latest PatientsLikeMeOnCall podcast series, entitled “It’s Friday – Let’s Journal Club.”

Dr. Taha Kass-Hout, MD, MS

This week’s guest is Dr. Taha Kass-Hout, Deputy Director of the Division of Notifiable Diseases and Healthcare Information at the CDC. He came by PatientsLikeMe headquarters recently to discuss the BioSense project, an initiative launched following 9/11 and the subsequent Anthrax threats to create an integrated national public health surveillance system for early detection of potential bioterrorism-related illnesses.

After this important Journal Club talk, PatientsLikeMe’s Aaron Fleishman sat down with Dr. Kass-Hout to learn more about the evolution of the BioSense program, which Dr. Kass-Hout oversees. Listen in below to hear what Dr. Kass-Hout had to say about the current expansion of the program to include other human health hazards, from chronic illness to infectious disease, as well as the new “cloud” technology involved.

What Patients Are Saying About Yoga

Posted September 15th, 2011 by

National Yoga Awareness Month

Never done a downward dog? Now is your chance.

September is National Yoga Awareness Month, a grassroots campaign to inspire a healthy lifestyle. As part of this national observance, those who have never experienced yoga can try it for free for a week at more than 1,600+ participating studios. Also, beginners and veterans alike are invited to come together for “The Time for Yoga,” a worldwide yoga session held on the last day of the month – Friday, September 30th – at 7:00 p.m. local time.

Here at PatientsLikeMe, more than 530 patients report practicing yoga for reasons such as general health, spasticity/stiffness, fibromyalgia and improved flexibility. The most common “dosage” is 30 minutes daily.

Yoga can be practiced by all ages

What do these patients have to say about yoga? Here is a sampling of the reviews and tips found on the more than 120 treatment evaluations submitted about yoga.

  • “Yoga is so good for so many reasons! It helps me stretch my stiff body, strengthen core muscles, and gives me calm and purpose for the day. I always tell myself I should do some yoga every day! Unfortunately, I find having a class and good teacher is really the motivation I need to stick with it.” – Patient with MS
  • “Yoga comes with many other benefits, such as learning to get in touch with your body, listen to your body, and treat your body with the compassion that it deserves. In the process, you also learn to treat your whole self with compassion. Since being chronically ill involves a lot of surrender to discomforts that are way out of our control, it is good to have a way to remind yourself that you are sacred and that you are not your pain and fatigue, but something bigger.”Patient with fibromyalgia
  • “Give it a try for three months, most everyone I know comes and sticks with it. I was one of the only males in the class to begin with but now about eight guys rotate in and out. Love yoga. The teacher said the para sympathetic something is activated with yoga, and Tai Chi does it as well; other exercise does not. Give it a try, it helps me.” – Patient with Parkinson’s disease
  • “It was a huge step for me to start taking yoga as I have found it increasingly difficult to be around people, but I went for myself and found that it really helped me to just delve into my own space. Hatha yoga is very pleasant because it is enough of an exercise that you notice the health benefits, but it is not so strenuous as to create long lasting physical discomfort. The unexpected benefit is the increase in self control that I am finding, and I haven’t had any lingering thoughts of suicide since starting it.” – Patient with major depressive disorder

If you’re considering yoga, learn more about what it entails – and what potential benefits it has – on Yoga Month’s “New to Yoga” page.

Photo of the Week: A Gathering of Hearts

Posted September 14th, 2011 by

Last month, we featured a blog interview with ALS advocate Debra Quinn, who is the spokesperson for the Hearts for ALS NY organization. Today we’d like you to meet her PatientsLikeMeInMotion-sponsored team for the 2011 Hearts for ALS NY Walk, which took place on August 21, 2011, in Angelica, New York.

Debra Quinn and Team at the 2011 Hearts for ALS NY Walk

Congrats to Debra (far left in the white T-shirt), her incredible supporters (wearing blue PatientsLikeMeInMotion t-shirts) and all of our sponsored teams for your efforts to raise funds and awareness for your condition. We’re honored to support you every step of the way.  For more PatientsLikeMeInMotion team photos, check out our new Flickr slideshow.

Organizing a team for this fall?  Sign up for PatientsLikeMeInMotion today.

What Do You Know About Celiac Disease?

Posted September 13th, 2011 by

Gluten-free products are now readily available in many grocery stories – and for good reason. One in 133 Americans has celiac disease, an autoimmune digestive disease that damages the villi of the small intestine and interferes with the absorption of nutrients from food. As a result, people with celiac disease cannot tolerate gluten, a protein that is found in wheat, rye and barley products.

On September 13th, the United States recognizes Celiac Awareness Day as a result of a resolution passed by the Senate. The date has special meaning as it’s the birthday of Dr. Samuel Gee, the British pediatrician who offered the first full clinical picture of celiac disease in 1888 and also theorized that a special diet may help. Thanks to his research as well as ensuing medical advances, it is now possible to be tested for celiac disease antibodies and undergo further diagnostics, including a genetic test and/or biopsy. There are also numerous products, recipes and resources to support those on a gluten-free diet.

National Foundation for Celiac Awareness

The problem, however, is that many people go undiagnosed. According to the National Foundation for Celiac Awareness (NFCA), which sponsors their own awareness month in May, 95% of celiac patients are undiagnosed or misdiagnosed. That means that up to three million Americans are suffering from the symptoms of celiac disease – which can include bloating, abdominal pain, diarrhea, nausea, migraines, rashes and joint pain – without knowing why. See this helpful checklist for a full list of symptoms as well as other conditions commonly linked with the disease. For example, a recent study found that celiac disease prevalence was 5-10 times higher in those with multiple sclerosis.

Think you or a family member might have celiac disease? Wish you could discuss it with someone who can relate? You can! Here at PatientsLikeMe, 115 members report celiac disease. Explore their profiles and get to know a patient with celiac disease.

Our Pledge to You, the Patient

Posted September 12th, 2011 by

“We founded PatientsLikeMe on the concept that sharing health data could lead to a more empowered patient and better overall healthcare system. It’s an exciting and giant step forward for us as an industry as we unite around making health data more accessible to those that matter most – the patients.”

Ben Heywood, PatientsLikeMe Co-Founder, President

Today the first-ever Consumer Health IT Summit is taking place in Washington, DC. Sponsored by a division of the US Department of Health and Human Services (HHS), this new initiative is designed to empower individuals to be more engaged in their health through the use of health information technology (IT).

During the summit, both government health agencies and private sector organizations like PatientsLikeMe will be highlighting the ways they plan to support your access to electronic health data. For example, HHS Secretary Kathleen Sebelius unveiled new proposed rules that would expand the rights of patients to access their health information as well as a model privacy notice template that can be used in the process. In addition, HealthIT.gov, a new resource for consumer health empowerment, was announced.

Visit HealthIT.gov today to learn more about your right to access your own health information

PatientsLikeMe is participating in this important initiative by making our own pledge to you, which we are committed to completing by spring 2012.

“We pledge to make it easier for individuals and their caregivers to have timely access to their health information in a convenient, useable format through our website.  As we continue to encourage and enable them to use this information to improve their health and their care, we pledge to:

1) improve patients’ accessibility to their personal health information by making our Doctor Visit Sheet (a document detailing an individual’s health data and experience) downloadable through multiple formats, including electronically readable formats like PDFs and the “Blue Button” ASCII text standard format;

2) encourage patients to dialogue with their peers and providers about the benefits of accessing and understanding their health data;

3) continue “Putting Patients First” by building a website that helps them to share, access and learn from their health information online.”

What’s a Blue Button, you ask? An open government initiative, Blue Button represents a collaboration between the Veteran’s Administration and HHS to develop an online feature that would enable Veterans and Medicare beneficiaries to easily read, use and share their personal health information with providers and others they trust. The ASCII text file format was selected for its ease of use by individuals, while allowing computers to easily “read” the information.

“Go Back for the Future” of Parkinson’s Research

Posted September 9th, 2011 by

2011 Limited Edition Nike MAG Shoe

Haven’t heard of the Nike MAG shoe? Perhaps that’s because it’s only been worn by one person – the indelible Marty McFly (Michael J. Fox).

Yet today, this rarest of Nike Footwear will become a reality for a lucky few. 1,500 pairs of “the most famous shoe never made” are being auctioned off on Ebay thanks to a special partnership between Nike and the Michael J. Fox Foundation for Parkinson’s Research. “Together, we’re going to help erase Parkinson’s disease from the time-space continuum,” they write. 100% of proceeds benefit the Foundation. In addition, a matching gift will be made for all final bid amounts by Sergey Brin, the co-founder of Google, and his wife Anne Wojcicki, founder of 23andMe, a PatientsLikeMe partner.

Originally developed as a prop for Back to the Future Part II, the 2011 Nike MAG shoes have been entirely rebuilt and perfected by top Nike designers for this special limited edition run. They feature an electroluminescent outsole, space-age materials and a rechargeable internal battery good for 3,000 hours. Hello, McFly! While they are not recommended for sports use or your regular footwear, they are definitely recommended for blowing the minds of Back to the Future fans around the world. Need your own pair? Tune in to the Ebay auction, as bidding ends soon.

While this incredible collector’s shoe may be too “out of this world” for many non-time-travelers’ budgets, we applaud this unique cross-promotional approach to raising research funds for Parkinson’s disease, a progressive disorder of the nervous system that affects more than 5,700 PatientsLikeMe members. Here’s to a MAG-tastic auction and a future without Parkinson’s.