multiple sclerosis

Patients showcase PatientsLikeMe to their local support group

Our members are very enthusiastic about the value generated by sharing their information. So much so that recently two of our members decided to don their hard-earned PatientsLikeMe t-shirts and share their experiences using PatientsLikeMe with their local MS support group. They recruited several new members at the meeting and gave more information about PatientsLikeMe to everyone. Our members believe that the more information we share, the easier it will be for patients and doctors to see what’s working for others and for scientists to use the data to develop new treatments faster. This is a great example of patients helping other patients and we love seeing our members share, online and in real-life. Thanks!

The “We Have MS Together!” video

Learning from each other can be addictive, and even fun at times. One of our more prolific (and outspoken and creative) MS members, Keeping On, decided to celebrate her 1000th post with a musical salute to some of the most humorous posts and posters in our MS community. So she got together with another witty member, sacleveand, to produce and star the video “We Have MS Together!”

Community Report: The composition and experience of the Multiple Sclerosis community

Six months after its public launch, the MS PatientsLikeMe community includes over 1 in 200 MS patients in the U.S. and the rate of growth continues to escalate. To mark the occasion and experiment with new community tools, we put together the first PatientsLikeMe community report. In this report, we begin to paint a portrait of the MS community, who is in it, and how the community compares with previous research on MS. This post features portions of the report. In the descriptive section we discuss characteristics of the user base such as what types of MS users have. As you can see in the figure below, all types of MS are represented with 61% of users report having relapsing and remitting MS. The report also explores research questions that the size of our community now allows us to address. For example, we look at the many ways MS first manifests itself – the variety of initial symptoms. In the figure below, we chart how two different types of MS (relapsing-remitting and secondary progressive) first appeared. The most common first symptoms for both types were “sensory changes” and “optic neuritis.” But “Difficulties walking” was a more common first symptom for …

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PatientsLikeMe T-Shirts

As the holiday spirit finally came upon us we thought we should do something nice for our members. There are thousands of them (and many more every day), so it isn’t reasonable to thank every one (we may look like Santa Claus, but we’re not, sadly). So we decided to thank the “stars” of the community – our three star members- and send them a PatientsLikeMe package with a rare PatientsLikeMe T-shirt, and other goodies. Here are some of our members showing off their new shirts…. This is one of our longer-time MS members, jhcamero, who has recorded 12 years of treatment and symptom information on the site. You have to love the “Christmas Story” lamp and stocking in the background. This is Kakijade, who was diagnosed fairly recently, and has used the site to track her care since joining in August. Both of these members are frequent contributors to the site. Both are being treated with newer meds, and their sharing of their experience with these drugs is very helpful for other members. PatientsLikeMe is about patients sharing their experiences and outcomes with each other so they can all better manage their disease and make the best possible decisions. …

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PatientsLikeMe Update: November 2007

It’s been six months since we launched our first newsletter, and a lot has happened at PatientsLikeMe in that time. With the holiday season now upon us, we thought we should give thanks for the amazing strides made in all our communities. There is power in numbers, as they say, and we are grateful to every new member for increasing our ability to effect change. ALS Community We are proud to announce that our flagship ALS community has grown by nearly 50% in the last six months to 1,450 patients. We’re even prouder that it now attracts the equivalent of 10% of all newly diagnosed ALS patients in the US. To share what researchers can learn from this model for openness, our own Paul Wicks, PhD, will present a lecture on social medicine at the upcoming 18th Annual Symposium on ALS/MND, which we are co-sponsoring. Please stop by the PatientsLikeMe booth if you’ll be there! MS and Parkinson’s Communities Launched in late spring, our MS and Parkinson’s communities have also experienced staggering, if not meteoric, growth. We are delighted to report that our MS community recently hit a major milestone when it surpassed the 2,000-member mark(!) while our Parkinson’s community …

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Happy Thanksgiving! PatientsLikeMe MS Patient Spotlight: FeliciOlivar

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview one patient each month to find out more about how he or she approaches life. This month we are pleased to feature FeliciOlivar, a two-star member. 1. What are you thankful for? I am thankful for being able to walk. That was my worst flare of them all. I woke up one morning and fell right down to the floor. As devastated as I was that my worst fear had come to be, I didn’t let anyone know that I was petrified at not being able to walk or do anything for myself. It was a horrible time for me, but I was determined that I was going to be able to walk again. I’m glad that I can walk even if I do still trip over my own feet. I’m also thankful for the family that stood behind me through that tough time. 2. What do you have in abundance in your life? I have laughter. If you cannot laugh at yourself, then what are you going to do? I laugh at myself all the time, if I don’t …

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PatientsLikeMe MS Patient Spotlight: jtjackson

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview one member each month to find out more about how he or she approaches life. This month we are pleased to feature jtjackson, a two-star member. What is your favorite time of the day? My favorite time of day is the morning, about a half hour after being up (between 6:30 and 7:30 a.m.), having my first cup coffee and thinking about what I can do today. I always have so much energy at this time and feel like I can conquer the world. Usually, reality sets in about 11 a.m. that I really do have MS and I need to slow down and rest (due to fatigue) so I am able to function enough to do the easy stuff. What makes you laugh? My two daughters (ages 27 and 17) really make me laugh (belly laugh) when they get to talking about themselves, their lives, people they’ve met – they literally do impressions of all kinds of people, from the abled to the disabled (they call them and me the “special” people), and watching them do their thing really …

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Business 2.0 and CNN Money Recognize PatientsLikeMe as one of its “Next Disruptors: 15 Companies That Will Change The World”

PatientsLikeMe, the leading treatment and outcome sharing website for people with life-changing conditions, has been recognized by Business 2.0 and CNN Money.com as one of their 2007 “Next Disruptors: 15 Companies That Will Change The World“. “We are honored to receive this recognition. However, we know we still have much to do in order to achieve our mission of helping patients learn from shared real-world outcomes so we can all contribute to finding the best treatment options,” explains co-founder and CEO, Benjamin Heywood. PatientsLikeMe has taken an extraordinary position regarding patient data believing that openness and sharing, rather than strict privacy, is the best way for people to take control of their health care, improve outcomes, and accelerate research. The company has its Openness Philosophy posted on its website for anyone to view. PatientsLikeMe also shares aggregated data from its members in order to share data with the world, recently announcing their data repository in ALS, Multiple Sclerosis and Parkinson’s.

PatientsLikeMe Unleashes Real-World Treatment and Symptom Information to the Public for ALS and Multiple Sclerosis

PatientsLikeMe, the leading treatment and outcome sharing community for people with life-changing conditions, has released the most comprehensive real-world treatment and symptom dataset on ALS (Lou Gehrig’s Disease) and Multiple Sclerosis (MS). Previously, similar real-world information would have had to be mined and aggregated from proprietary sources such as hospital systems or insurance companies. Now, anyone can go to PatientsLikeMe.com and search for a particular treatment or symptom to find out the experience of over 2,300 patients. This unprecedented database includes medication dosage ranges, lengths of time on a treatment, reasons for discontinuation, symptom severity, and other key experience measures on over 1,300 treatments and 300 symptoms. Learn more….

PatientsLikeMe Supports Team in Mid-Michigan MS 150 Bike Ride!

In late June, PatientsLikeMe Head of Business Development David Williams received an email from his high school classmate Bill Ogden. Bill needed help, you see. He and his wife were preparing to take part in the Mid-Michigan Multiple Sclerosis Bike Tour, which covers 150 miles over two days. Bill explained that they were riding in support of one of his old friends John Rafter (pseudonym), who was diagnosed with MS in 2001. PatientsLikeMe donated $750 towards Bill’s fundraising goal. We salute everyone out there who steps up in support of patients they know and love, not to mention those they’ve never even met. See the picture of the team with their PatientsLikeMe t-shirts!

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