18 posts from December, 2010

Sharing and Learning with PatientsLikeMe

Posted December 22nd, 2010 by

In December community newsletters (launched earlier this week), we asked some of our members to think about what they’ve shared and compared in 2010.  Below are highlighted answers from each interviewee across all nine community newsletters.  Thank you for your contributions.

We also want to thank all of you who have contributed to the 90 newsletters we ran this year, including the newly launched ones in our Epilepsy and Transplants communities.  Finally, a special thanks goes out to our newsletter writer, Amy Morton, for pulling these together every month.

To review all of our newsletters, you can visit our archives page here.

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2166 (Amy)

How has PatientsLikeMe helped you learn and share this year?

tommymkr (Tommy Maker – ALS Community)

PatientsLikeMe has provided me with new friends-people who are experiencing the same problems as I am. I’ve learned that there isn’t a single question that won’t get a vast myriad of answers from the community. I’ve learned that we’re all very different people, and I’ve learned we don’t always agree.  I’ve learned that we all care enormously for each other and are very eager to help those who find themselves in the same boat as we are. But most of all I’ve learned that I am not on my own.  I’m not the only one facing a bleak future and not the only one who is able to appreciate what he has at the moment.

cobe (cobebu8 – MS Community)

I really like it here in that I can keep track of all my meds with their side effects, etc.  Plus I like it that I can list symptoms and have a history of all of it to review and learn from and share with my doctors. I hope that my input on meds, therapies, etc., helps other people. It is good not to be alone.

mtnlady (mountain lady – Parkinson’s Disease Community)

It has given me the experience of reading about others who are in situations similar to mine.  It has shown me that I am not alone.  I love reading the newsletters and the comments from other readers. It also helps to keep me up-to-date on any new suggestions or treatments.

Also, I became acquainted with someone online through PatientsLikeMe.  We actually live in the same town, both work in the field of Education and have had Parkinson’s for the same length of time.  Getting together with her was a pleasure, and she introduced me to the idea of meeting with a support group, which I had never done before.

(ellieGADsufferer – Mood Conditions Community)

It is invaluable. I find the Symptoms and Treatments areas so helpful. I have learned (from genuine people who are taking these meds) that some of my “quirky” side effects and sufferings from the meds I take can and do happen to others and are not imaginary.  (My general practitioner and Consultant just brush the list aside and shrug their shoulders).

I have learned that I am not alone with my illnesses, which is good to know, and I have also learned that there is “light at the end of the tunnel.”  I try to keep my profile as up to date as possible in the hope that it will be helpful to at least one or two members. I rate my Daily Mood [now called InstantMe] at least five days per week and always complete my Mood Map, again for the same reasons.

Well done PatientsLikeMe and its members. Keep going, you are doing really good work and long may it continue.

andrew (andrewn78 – HIV Community)

I love organization and having PatientsLikeMe help me to organize all of my medical information. I would like to have an ability to log simple notes on the PatientsLikeMe profile so every time I go to my doctor I can make some general notes (if needed) for that visit on my experience and what was covered with my provider.

(Note that all users can now use InstantMe to add notes/annotations to your Doctor Visit Sheet)

nates (Nates-Sweetpea – Fibromyalgia/CFS Community)

PatientsLikeMe has been such an encouragement to me, not only in what others have given to me through sharing their stories, but also by opening up a window for me to be an encourager also. I love the newsletters that are super reminders of how to not get off track, and also how to be good to myself.

(kg10043 – Epilepsy Community)

I think I have been pretty good at sharing, but this has been one new method, especially with some of the health issues with others facing similar situations. In the past I have answered questions for people who had their first seizure or just questions, but with this site, I am able to communicate with others who have had the same operations, take the same medications, etc., and really understand things better (from a different perspective).

kidneygirl (kidneygirl1198and0505 – Transplants Community)

PatientsLikeMe has helped me so incredibly much!  I’ve made so many friends that I thank God for every day.  It’s just like, no matter what you have or haven’t had transplanted, whichever organ you need or have, everyone on here understands you and what you’re going through.

I just really hope that people can say that about me.  It took me awhile, but no one is alone out there.  Everyone is going through their own personal struggles.  I just want everyone to know I am all ears!

PatientsLikeMe member lscanlon

PatientsLikeMe at the American Epilepsy Society Meeting 2010

Posted December 20th, 2010 by

AES 2010 boothEarlier this month, PatientsLikeMe was fortunate enough to attend the 64th Annual Meeting of the American Epilepsy Society in San Antonio, Texas. We were there to spread the word about PatientsLikeMe to some 4,000 attendees including epileptologists (physicians specializing in the treatment of epilepsy), neurologists, nurses, and researchers. We had a great spot on the booth of our partner UCB, which featured a large display for us to show the site to conference delegates and answer any questions they might have. Some of the typical questions we got were:

  • “Is this free for patients to use?”   Answer: yes!
  • “How do patients record their seizures?”  Answer: they can very quickly and easily enter both the frequency and severity of each kind of seizure they had during the week
  • “Can I send you some patients?”  Answer: definitely!
  • “What kind of research can you do with the site?”  Answer: stay tuned…

We were also there to present a poster comparing our data to another large data set, the Pharmetrics insurance claims database. Now, we know reading about statistics isn’t the most thrilling of subjects, but the idea was to answer another important question we hear all the time: “How biased is your community?” Biases are important because they affect the quality of the research you can do and the conclusions you can draw from your findings. In our case, an early comparison of our data against a claims database suggests that our community members are more likely than the wider epilepsy population to be:  i) female, ii) in their 30s-40s (more people tend to experience their first seizure either in infancy or old age), and iii) on multiple medications to treat their seizures (“polytherapy”). We want to be transparent about understanding our biases and sharing them with the world, so you can click on the poster below to see the exact findings we presented.


The conference was also a great opportunity to meet other leaders in the online epilepsy space, such as our friends at CURE Epilepsy.org, Epilepsy.com, Seizuretracker.com, and to meet with researchers from an exciting online project called the “Managing Epilepsy Well Network.” In many ways epilepsy is leading the way in online resources and we hope next year we might even convene a special meeting for us all to share ideas on the best ways to help this important patient community.

Our last opportunity to spread the word about epilepsy fell upon our Chairman and Co-Founder Jamie Heywood.  He spoke to some of today’s leading epilepsy doctors in the world about how we can help patients answer the question: “Given my status, what is the best outcome I can hope to achieve, and how do I get there?”

PatientsLikeMe member pwicks PatientsLikeMe member AMGraham