Did you know that yesterday was Fibromyalgia Awareness Day?
The PatientsLikeMe Fibromyalgia community is growing exponentially with more than 3400+ members just five months after its launch! Many of our members are feeling newly empowered by their membership in our community and are attending events, wearing pins and ribbons and taking the time to spread awareness about what it’s like to live with fibromyalgia.
This sharing mirrors the sharing they do on the site. At PatientsLikeMe, members build their profiles by sharing information about their condition, such as symptoms and treatments. Top treatments cited to date include rest, heating pads, walking, stretching and the drug Lyrica. The most commonly listed symptom is pain, followed by fatigue, memory problems and lower back pain. In addition to sharing health information, patient members also share their personal experiences and tips with each other. In our forum these past few months, patients have discussed all kinds of topics, including finding the right doctor, coping with pain and fatigue and how to explain how they really feel to their friends and family.
With all this sharing, patients are learning more about themselves, helping each other better understand this condition, and improving their overall quality of life. In fact, in a recent survey amongst some of our members with fibromyalgia, 85% of our respondents agreed or strongly agreed with the statement – “I feel better about myself because of the recognition by others at PatientsLikeMe that my condition is real.”
If you are not already sharing and learning with other patients like you, we invite you to join our community here at PatientsLikeMe.
- Filed Under: Fibromyalgia
- Tags: Awareness, back pain, fatigue, Fibromyalgia, lyrica, memory problems, online health community, pain, PatientsLikeMe, sharing, social network, symptoms, treatments
Ars Electronica – one of the foremost centers for art and technology – honored PatientsLikeMe at their annual festival with the Award of Distinction. The Prix Ars Electronica is one of the most prestigious prizes in the fields of media, technology, animation, and interactive art.
This year, there were a record number of submissions with 4,056 overall. More than 220 online communities were competing in the newest category: Digital Communities. Previous winners in this category include Wikipedia, Free Software Foundation and Akshaya.net.
While PatientsLikeMe has been honored and cited for its innovation in the area of health and medical research, we were thrilled to be recognized directly for our social and artistic value. Central to PatientsLikeMe, and what drew many of us to work here, is our commitment to empower individual patients to become informed, engaged participants in both their own healthcare and in the creation of new scientific knowledge. This prize attests to our contribution in this area.
At PatientsLikeMe, as an inter-disciplinary team of researchers, designers, and engineers, we are building a platform for patients to both share and use health data. Our goal is help patients leverage their own experiences to make good decisions and improve outcomes. As a research scientist here, it is exciting to see how our carefully designed tools engage patients to record, reason with and apply data to inform all types of medical decisions.
So, it was a particular honor for me to be able to travel on behalf of PatientsLikeMe to Ars Electronica in Linz, Austria to accept this award focused on the social and creative value of the online communities for patients. I presented PatientsLikeMe to an international audience and the audio is available as a podcast on their site. Relationships with these new audiences and the resulting discussions help us continue to improve tools for patients to share and leverage data to improve outcomes.