The Value of Openness: The PatientsLikeMe Blog

You raised your voice, we listened.  Today we launch our newest community:  Fibromyalgia.  This is the first in our special blog series, Voices of Fibromyalgia.

The impact of the disease on people’s lives can be enormous.  People often have difficulty completing even the easiest of tasks during the painful episodes, while the fatigue can also be debilitating.  Many patients with fibromyalgia struggle with presenteeism at work which can lead to disciplinary action or worse.

It’s time to take a stand.  We have decided to build this fibromyalgia community because we want to capture the realities of this disease and give patients a voice.  We want to research it and understand how it affects people’s lives.  We want to use this data and the community to create awareness about the disease and settle the “debate” about the validity of the condition.

Let your voice be heard.  Join the PatientsLikeMe fibromyalgia community, share your experiences, and let’s work together to advance the knowledge of this disease.

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!