One for All

One for All: The Opportunity to Make Patients’ Lives Better

“Patients are giving us their data, and we need to honor that by doing something that advances their disease, their cause, their power in the world.” – Jamie Heywood This week marks the fourth and final installment of our latest video series, which explores what the recent changes at PatientsLikeMe mean for you as well as the entire medical establishment. (Missed the first three interviews? Catch up on what PatientsLikeMe executives Ben Heywood, David S. Williams III and Paul Wicks had to say.) In today’s video, PatientsLikeMe Co-Founder and Chairman Jamie Heywood talks about the next steps in realizing the goal of PatientsLikeMe: to help all patients determine how they can affect their health outcomes and live the longest, most productive lives possible. What will it take to do that? Tune in to hear his vision of how healthcare could evolve as quickly as technology, provided that the concept of shared data is fully embraced. To keep up with all PatientsLikeMe videos, subscribe to our YouTube channel today.

One for All: How Medical Research Is Changing Right Before Our Eyes

“I think what’s really exciting is the scale we’re operating under.  My PhD was conducted with 80 patients.  Last week, I got survey responses from 4,000 patients in a week.  That is unparalleled power in the research world.” – Paul Wicks, PhD This week marks the third installment of our latest video series, which explores what the recent changes at PatientsLikeMe mean for you as well as the entire medical establishment.  (Missed the first two installments?  Catch up on what PatientsLikeMe executives Ben Heywood and David S. Williams III had to say.) In today’s video, PatientsLikeMe R&D Director Paul Wicks shares his thoughts on how the increased scale of PatientsLikeMe will impact not only the types of patient tools we develop moving forward but also the way medical research is conducted.  Tune in to hear some highlights of how PatientsLikeMe research efforts are already helping patients and researchers better understand what causes certain diseases. Stay tuned for the fourth and final installment of our video series next week.  To keep up with all PatientsLikeMe videos, subscribe to our YouTube channel today.

One for All: Walking the Road Ahead with Both Patients and Industry

“You’re the patient who’s taking the medication. But industry can act almost like a friend who’s walking with you. And that relationship has never been the case in healthcare. Never.” – David S. Williams III Last week, we kicked off our latest video series with an interview with President and Co-Founder Ben Heywood about the “long road” we’re all on together to change the way healthcare works for patients like you. This week, Chief Marketing Officer and Head of Business Development David S. Williams III offers his perspective on how our industry partners can take part in this collaborative journey. Listen in to hear his thoughts on a new type of patient-industry relationship that is now possible thanks to social media. Curious what other parties will share this “road” with us? Stay tuned for next week’s video interview with another member of the PatientsLikeMe executive team.

It’s Fibromyalgia Awareness Day!

At the National Fibromyalgia & Chronic Pain Association, this year’s Fibromyalgia Awareness Day is themed CURE FM (Campaign for Understanding, Research & Education of Fibromyalgia), and many of our members are working to do just that. Beginning as early as January, our fibromyalgia members have worked together to order t-shirts, send letters to TV shows and spread the word about fibromyalgia through their online social networks. So what’s fibromyalgia really like? The best way to find out is from patients directly. Since we opened our doors to fibromyalgia patients in November 2008, we’ve had 13,826 fibromyalgia patients join our community and share their real-world experiences with this chronic pain disorder, which is characterized by pain or aching in the muscles as well as multiple points of tenderness. Among other things, patients with fibromyalgia have reported that: The most prevalent symptoms include pain, fatigue and memory problems The most widely used prescription drugs are Duloxetine (Cymbalta), Pregabalin (Lyrica), (Ultram), Gabapentin and Cyclobenzaprine (Flexeril) The most common lifestyle modifications are rest, physical activity and exercise as tolerated and hot showers They also share practical tips for living with this debilitating condition in our forum every day. Some of the most popular topics …

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Join the Band: Raising Our Voices for Lupus Awareness

“I was diagnosed with lupus (SLE) at age 20 and had already lost about 60% of my kidney function. I had chemotherapy for nine months along with intense steroid therapy. I thankfully went into remission and have been since four months after my diagnosis. I still struggle with fatigue and kidney problems although I was transplanted in 2004. I will need another transplant most likely within the next year or two.” – Lupus patient, age 30 May is Lupus Awareness Month, and today, May 10, is World Lupus Day. Since PatientsLikeMe began welcoming all patients last month, we have quickly become home to more than 100 members with systemic lupus erythematosus (SLE), the most common form of this chronic autoimmune disorder that can affect any organ system in the body, including the heart, kidneys, lungs, joints and skin. Here are some quick facts about SLE gleaned from our new members. What is the gender breakdown? 96% of our new SLE members are female, and 4% are male, which fits with research showing a much greater prevalence of the disease in women. What are the top treatments? The most widely used prescription drugs reported by our SLE patients include , Hydroxychloroquine, Mycophenolate, …

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One for All (Video): The Road Ahead at PatientsLikeMe

“We’re just getting started on a long road to really impact your individual disease and your quality of life…” Each week this month, we’ll be posting a video interview with a member of the PatientsLikeMe executive team.  You’ll hear from Ben Heywood, Jamie Heywood, David S. Williams and Paul Wicks, Ph.D. about what the recent changes to PatientsLikeMe mean for patients, research, industry and the entire medical establishment. Today, listen in to hear what Ben has to say about why we’re on this “road,” what has been improved with the recent upgrades and how sharing your own health journey moves us forward.  You can also see last week’s video teaser here.

PatientsLikeMe Refutes Published Clinical Trial

Congratulations to our R&D team here at PatientsLikeMe for its most recent paper published in Nature Biotechnology (“Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm”).  The full paper has been made available by Nature so you can read the results and access all of the supplemental data and figures. Below are links to some of the media coverage about the paper, as well as a link to our own news release announcing the study results. A special thank you to all of the ALS patients on our site for sharing the data that helped create this new insight and accelerate discovery like its never been done before.  Now that we’re open to all patients with any condition, we know your sharing will inspire the masses to share and learn together. *** Marketwire (our news release) PatientsLikeMe Social Network Refutes Published Clinical Trial The Wall Street Journal ALS Study Shows Social Media’s Value as Research Tool (paper) The Future of Social Network-Based Trials (blog) Boston Business Journal PatientsLikeMe hits ALS study FierceBiotech IT PatientsLikeMe study challenges prior ALS claims

One for All: The Road Ahead with PatientsLikeMeInMotion™

This Spring, as you’re out at disease-related fundraiser events, take note of the people in those bright blue t-shirts walking, running or biking by your side. Those are patients like you! Since its launch in 2009, more than 1,700 people (including patients, friends and family members) have taken part in the PatientsLikeMeInMotion™ program to raise money and awareness for various conditions. Here are some fun facts about PatientsLikeMeInMotion and a video of some of our members who have participated. 2009 Quick Facts 2009 marked the debut of the PatientsLikeMeInMotion program. Approximately 40 PatientsLikeMe members signed up teams to participate in PatientsLikeMeInMotion and led more than 700 people on PatientsLikeMe teams across the United States. In its first year, the PatientsLikeMeInMotion program donated over $9,000 for charitable disease foundations such as the National MS Society (NMSS), Parkinson’s Alliance and the ALS Association (ALSA). The largest member team in 2009 was formed for the annual Parkinson’s Unity Walk in New York. It’s here where we first met and interviewed some of our members (see our YouTube page to meet them). 2010 Quick Facts A breakout year for the program, PatientsLikeMeInMotion doubled our number of sponsored teams from 38 in 2009 to 60 …

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One for All: Ways You Can Share, Find and Learn at PatientsLikeMe

When patients join our site, a common question we get is, “Now that I’ve signed up, what can I do here?” One answer is that you can chart the real-world course of your disease and compare it against other patients. But that sounds a little complex, doesn’t it? If we break it down into simpler terms, we are really talking about you sharing your health outcomes with each other, finding other patients like you and learning from the information that you have all shared. That’s why “Share, Find and Learn” is part of our core message at PatientsLikeMe, as it best explains how you can help each other with the in’s and out’s of your condition. To give you a better understanding of what we mean, we recently asked a few patients like you for examples of how you’ve used PatientsLikeMe to “Share, Find and Learn.” PATIENT 1 (MS) SHARE: “I’ve shared as much information [as possible] about the medications I’ve taken and still take and the CCSVI procedure that I recently went through. ” FIND: “It’s helped tremendously when there are others that have undergone the same treatment or procedure in that we can share updates or milestones.” LEARN: …

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One for All: A Building of Hope

As you know, we like to just check in with our members to see how you’re doing as a person, not just a patient.  Today, we have a very special interview with one of our earliest members with ALS, SmoothS.  We sat down with SmoothS to talk about his recent building of the first ever ALS rehabilitation center – the Leonard Florence Center for Living, (LFCL) – which opened in November of 2010.  Along with the interview, below is a video of the grand opening event. Have a good weekend! * * * (Amy) Steve this rehab center rocks! Can you tell me what inspired you to start this project? (SmoothS) That easy; it is the horrible conditions in which a vented pALS is forced to live if you have no option to stay home. After my diagnosis, I was doing some research on my residential options when my care became more than my mother could handle alone. What I found was not pretty. There was nothing except for run-down nursing homes and chronic hospitals. I was discussing the problem with my friend Ron Miller and we tossed around the idea of a pALS residential co-op. I was at an …

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