18 posts from December, 2011

Open Access for All: PatientsLikeMe’s Epilepsy Survey Results Now Published

Posted December 22nd, 2011 by

Last April, we had the honor of presenting the results of our epilepsy survey at the American Academy of Neurology (AAN) Annual Meeting.   In some of the key takeaways, we shared that 55% of respondents consider PatientsLikeMe “moderately or very” helpful in learning about the type of seizures they experience. 45% found it useful for charting seizures, and 30% felt they received better healthcare as a result. In addition, 27% each said that PatientsLikeMe was useful for managing side effects and for improving treatment adherence.  (Check out our press release for more on this survey, which we conducted with our partner UCB.  PatientsLikeMe and UCB launched the epilepsy community in 2010.)

A Sample Section from the Epilepsy Survey

Now, we’re pleased to announce that our full survey results have been published as an open access article in the scientific journal Epilepsy & Behavior.  This gives you and anyone interested in epilepsy the opportunity to dig deeper into our findings.  For example, another interesting discovery is that one in three epilepsy patients surveyed did not know a single other person with their condition.  That is – until they joined PatientsLikeMe.  Survey respondents reported the benefits of using an online community to find other patients like them, and strikingly, the more friends with epilepsy that users had in the online community, the more benefits they experienced from using the site.

Do you agree that having friends with the same condition – either online or offline – has affected your experience for the better?  Share your thoughts in the comments section.

PatientsLikeMe member pwicks

A Peek at the December Newsletters for Members

Posted December 21st, 2011 by

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our December 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.


Can’t sleep this holiday season?  It’s not just you.  Did you know that…

  • More than 23,000 of you – nearly a fifth of all PatientsLikeMe members – report insomnia?
  • People with insomnia may also experience impaired function, mood issues (e.g. irritabilityanxiety) and daytime drowsiness as a result?
  • There are two forms of insomnia:  secondary (where it’s the symptom or side effect of something else) and primary (where it is its own disorder)?
  • Members with insomnia have shared their experiences via hundreds of treatment evaluations for prescription drugs such as AmbienTrazodoneSeroquel and Lunesta?
  • Members have also evaluated over-the-counter (OTC) sleep aids like diphenhydramine (Benadryl) and Melatonin as well as herbal supplements such as Valerian and Passionflower?
  • There are numerous forum discussions about insomnia, including the six featured below in “Join the Conversation”?

Finally, here’s something else to know.  Logging onto to the PatientsLikeMe forum in the dead of the night can be a great help.  It may not cure your insomnia, but chances are, you’ll find several others who are awake and going through the same thing.

Here’s hoping your holidays are as restful and joyful as possible.

– KateEmmaLizJeanetteSharry

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What’s happening in the forum in the midnight hour?  Check out some of these insightful threads about insomnia below.  Then jump in with your own questions and answers.

Need help with something on the site?  Visit the PatientsLikeMe Site Help Room for answers from veteran members.


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

There are new labs and tests you can monitor at PatientsLikeMe. Use the search tool or browse the list to see what’s now available, including Blood Glucose, Ejection Fraction, PSA, Creatinine, AST and more.  Don’t see the lab or test that you’d like to monitor?  Email us at dataintegrity@patientslikeme.com with your request.

You can now click on the condition name in the header of any profile, including your own, to view the new-and-improved condition page.  Checking out someone’s profile and see a disease you don’t recognize? Simply click through to learn more.  Or from your own profile, click through on any of your conditions to see who else has it, the most commonly reported treatments and much more.