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


"This accountability creates a much more credible set of information.", 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 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.

"We're very proud to share this aggregated information with the world. Our community members believe everyone should benefit from shared experiences with prescription medications, nutritional supplements, and medical equipment," explains PatientsLikeMe co-founder and CEO, Benjamin Heywood. "As our community grows, so does the power of the data."

Behind the data are real people who actively share their treatment and symptom experience with other PatientsLikeMe community members. Although the default is for members to share their information only with other community members, many have chosen to release their individual profiles for general public viewing to help other patients know that they aren't alone in their fight against ALS or MS. Users can search and view these profiles by clicking on the "Patient" tab on the PatientsLikeMe homepage.

"What makes our data unique is that every data point is backed by clinical or functional outcomes data from real patients. Everyone can compare and evaluate progress, thus understanding the context of treatment utilization," adds Paul Wicks, Ph.D., neuropsychologist at King's College in London, UK and Resident Researcher at PatientsLikeMe. "This accountability creates a much more credible set of information."

Releasing this data can also help neurologists and other physicians learn how colleagues are prescribing a particular medication. Doctors can see the distribution of dosage ranges as well as side effect frequencies on numerous medications. It's a great way to keep abreast of the latest prescribing trends.

PatientsLikeMe plans to continue this information sharing with its upcoming communities focused on HIV, Depression, Bipolar, and Anxiety.

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About PatientsLikeMe

PatientsLikeMe is the leading treatment and outcome sharing community for people with life-changing diseases. PatientsLikeMe launched its initial community for ALS (Lou Gehrig's disease) patients in 2006 and has recently expanded to include Parkinson's disease and Multiple Sclerosis. Our unique focus on the sharing of real-world outcomes makes PatientsLikeMe an invaluable community for patients, physicians, caregivers, and researchers.

About PatientsLikeMe

PatientsLikeMe® ( is the leading online health community for patients with life-changing conditions. PatientsLikeMe creates new knowledge by charting the real-world course of disease through the shared experiences of patients with ALS, multiple sclerosis, Parkinson's disease, HIV, mood conditions (including depression, bipolar, anxiety, OCD and PTSD), fibromyalgia, chronic fatigue syndrome/myalgic encephalomyelitis, epilepsy and organ transplants. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world. PatientsLikeMe endeavors to create the largest repository of real-world disease information to help accelerate the discovery of new, more effective treatments.


PatientsLikeMe, Inc.
Lori Scanlon, 617-499-4003

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