The Value of Openness: The PatientsLikeMe Blog

In honor of this month’s Mental Illness Awareness Week, here’s a snapshot of what’s happening in our PatientsLikeMe Mood community. Launched in 2008, the community now has more than 18,000 patients. Below are some interesting facts about the community, so please read and share on!

DID YOU ALSO KNOW…

• You can search for patients under 15+ diagnosis categories, including depression, bipolar, obsessive-compulsive disorder (OCD), post-traumatic stress disorder (PTSD), anxiety, addiction to tobacco, addiction to alcohol, eating disorder and more.
• In a PatientsLikeMe research study recently published in the Journal of Medical Internet Research, we revealed:
  • 26% of responding mood community members agreed or strongly agreed that using the site had reduced thoughts about self harm
  • 23% agreed they had decided to start therapy or counseling after interacting with others on the site
  • 22% agreed they needed less inpatient care as a result of using PatientsLikeMe.  (See our “Patient Voice” report, video and member interview on inpatient therapy).
• Members’ experiences on the treatment Amitriptyline was used in an award-winning paper presented at Medicine 2.0 last year.

How are our members treating their condition?

• Patients are using more than 1700 treatments, including prescription drugs, supplements, over-the-counter medications, life-style modifications, therapies, and more.
• The top lifestyle modification reported by our patients is positive self talk; and sleep is the #1 exercise cited.
• The most widely used prescription drugs reported by members are Lamotragine, Clonazepam and Bupropion; the top 3 supplements are Omega 3 Fish Oil, Multi-Vitamins, and Vitamin D.

What are their major symptoms?

• The 5 most common primary symptoms reported include: Back Pain, Dizziness, Headaches, Hyperventilation, and Muscle Tension.

What are they talking about?

• Some of the top topics “tagged” in our forum discussions to date include specific treatments (like Lamictal, Lithium, Wellbutrin and Seroqul), as well as borderline personality disorder, coping, anger and journaling.

Today’s news release announcing acquisition of ReliefInsite.  Want to receive future announcements?  Sign up for our RSS feed on the press page.

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FOR IMMEDIATE RELEASE

PATIENTSLIKEME ACQUIRES ONLINE PAIN MANAGEMENT COMPANY, RELIEFINSITE
20,000 Patients Reporting Moderate to Severe Pain on PatientsLikeMe

Cambridge, MA and New York City, NY - February 16, 2010 - Today, PatientsLikeMe, the leading online community for patients with life-changing diseases, announces the acquisition of ReliefInsite, a pioneering online pain management company.

“Right now, there are more than 20,000 patients on PatientsLikeMe experiencing real pain,” says Ben Heywood, President and Co-founder of PatientsLikeMe.  “By acquiring ReliefInsite, we can improve the way we help patients effectively manage their pain.”

Conceived by founder Fred Eberlein in 2000, ReliefInsite’s patented online pain management technology developed into a secure HIPAA-compliant platform designed to help patients monitor their pain levels and share that information directly with their doctors.

“I’ve spent more than a decade inventing and advancing the technology platform at ReliefInsite to help patients manage their pain and improve the patient-doctor relationship,” says Eberlein.  “I’m excited this work has led me to my new home at PatientsLikeMe, where we can work together to better align industry’s interests with improving patients’ quality of life.”

ReliefInsite will continue to support its existing pharmaceutical and clinical clients as its functionality is integrated into the PatientsLikeMe platform. Eberlein joins the PatientsLikeMe team to lead the companies’ integration and enhance product offerings for partners in the life sciences industry.

Pain is a common symptom for people with all of the diseases on PatientsLikeMe, and is most prevalent in diseases like fibromyalgia and multiple sclerosis. In the depression community, thousands of patients report they are currently experiencing “back pain” or “stomach pain,” with 50% of those members describing their pain as moderate or severe. Across all of the disease communities, pain is a topic of discussion in more than 61,000 forum posts. Additionally, patients are using hundreds of treatment options to manage their pain from prescription medications, such as Cymbalta and Lyrica, to alternative solutions like acupuncture, massage and physical therapy.

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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.