Search Results for: Patient Voice

Interview with Jim Atwell, Author of “Wobbling Home: A Spiritual Walk with Parkinson’s”

9 Comments / Parkinson's Disease / By

Continuing our coverage of Parkinson’s Awareness Month, we’d like to introduce you to Jim Atwell, a PatientsLikeMe member who has been living with Parkinson’s disease (PD) since 2007. A retired college professor, late-in-life farmer and weekly columnist for his rural newspaper, Jim recently published his second book, Wobbling Home:  A Spiritual Walk with Parkinson’s.  This […]

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Recognizing Multiple System Atrophy (MSA Parkinson)

8 Comments / Rare Diseases / By

In observing Rare Disease Day at the end of February, we talked how there are 7,000+ conditions that are categorized as rare diseases due to their lower prevalence (less than 200,000 people in the US).  Today we’d like to spotlight one of these lesser-known conditions:  multiple system atrophy (MSA), which affects 536 PatientsLikeMe members and

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Medication Non-Adherence: The Costs and Complexities

Patient Experiences, Research / By

On October 24-25th, PatientsLikeMe attended the 8th Annual Patient Adherence, Communication and Engagement (PACE) Conference in Philadelphia. The event focused on how the healthcare industry can deliver measurable improvements in patient adherence (i.e., taking medications as prescribed by your doctor).  Put simply, how can we help patients like you take the correct dosages at the correct

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September Is Recovery Month

ALS, Chronic Fatigue Syndrome, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Patient Experiences, Rare Diseases / By

Every September, the Substance Abuse & Mental Health Services Administration (SAMHSA) observes Recovery Month.  The goal is to promote the societal benefits of treatment for substance use and mental disorders, celebrate people in recovery, recognize treatment providers and spread the message that recovery is possible.  As the SAMHSA slogan says, “Prevention works, treatment is effective

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I Will Not Be Quiet: An Interview with ALS Advocate Debra Quinn

4 Comments / ALS / By

Debra Quinn’s father, sister, aunt, grandmother and great aunt all passed away from ALS, and in 2009, she was diagnosed with ALS herself.  This hereditary form of the disease is called familial ALS (fALS). After the loss of her younger sister in 2007, Debra decided that she could no longer stay silent.Today, she is “the

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Being an Advocate for ALS

ALS / By

Last month, we had the opportunity to interview PatientsLikeMe member t1961, who attended ALS Advocacy Day, held May 8-10, 2011, in Washington, DC. What does it mean to advocate for your disease on Capitol Hill? How can you personally make a difference? Check out the interview below to learn why this ALS patient felt the need

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Treat Us Right: Comparing Cymbalta and Lyrica in the Fibromyalgia Community

30 Comments / Chronic Fatigue Syndrome, Fibromyalgia, Patient Experiences, Research / By

Since its launch in November 2008, our PatientsLikeMe Fibromyalgia Community has served as a place for more than 11,000 fibromyalgia patients to share with, find, and learn from others.  Over the past 2 years, thousands of you have reported using Pfizer’s Lyrica® and Eli Lilly’s Cymbalta® as prescribed treatments for your fibromyalgia. PatientsLikeMe recently analyzed

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Share and Compare: Be a PRO! Understand Your Experiences in Context

1 Comment / Epilepsy, Patient Experiences, Research / By

This week on our blog, we’ve been highlighting how patients like you are putting their experiences in context.  With the launch of InstantMe and some of the design updates you read about, you can see we’re listening to your call for more functionality that lets you understand how your condition affects the whole you. Patient

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Will Openness Bring About a Breakthrough?

ALS, Chronic Fatigue Syndrome, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Patient Experiences, Rare Diseases, Research / By

Share your thoughts in an innovative online event with our partner Myelin Repair Foundation. Our Openness Philosophy is centered around the idea that patients sharing their real world health data allows for collaboration on a global scale; that it will accelerate new treatments; and that it can change our health care system.  In this same

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ALS Awareness 2010: A Four Year Journey With Our PALS

3 Comments / ALS, Patient Experiences, Research / By

Four years ago this Spring, PatientsLikeMe launched the ALS community with very specific goals in mind – to help patients like you take control of your disease, share and learn from one another, have a voice in real-world research and inform the companies that make your drugs and can improve your care.  Together, we have

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