If you follow PatientsLikeMe on social media, you might have seen a few “Pop Quiz Tuesday” posts. Today, here’s a special pop quiz – what do fibromyalgia, myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) have in common? The answer is that they are classified as Chronic Immunological and Neurological Diseases (CINDs). And since 1992,… Continue reading Coming together for immunological and neurological health in May
Category: Patient Experiences
PatientsLikeMeInMotion™ 2015: Celebrating 7 years of PatientsLikeMe members giving back to their communities and raising awareness
For those of you who don’t know, our PatientsLikeMeInMotion™ program has been running since 2009—how time flies! Join us in celebrating our 7th year with a recap of 2014, our biggest year so far! Last year, we had the honor of supporting 2192 members across 32 states that participated in a range of events and… Continue reading PatientsLikeMeInMotion™ 2015: Celebrating 7 years of PatientsLikeMe members giving back to their communities and raising awareness
PatientsLikeMe Names Michael Evers New Executive Vice President of Consumer and Technology Group
CAMBRIDGE, MA., May 11, 2015—PatientsLikeMe today announced it has named Michael Evers the head of its newly-formed consumer and technology group. In this role, Evers will focus on creating value for patients and directing the company’s marketing, engineering, user experience and design, product management, patient advocacy and government compliance teams. He reports directly to CEO… Continue reading PatientsLikeMe Names Michael Evers New Executive Vice President of Consumer and Technology Group
Compassion for all: Adrianne shares how friendship grew from the life-altering Boston Marathon Bombing
From our partners and friends at the Schwartz Center for Compassionate Healthcare. In 2013, Adrianne joined the Schwartz Center in honoring the caregivers who saved her life after she was injured in the Boston Marathon Bombing, including a special thank you to Jeff Kalish, MD, of Boston Medical Center who performed her surgeries. Research shows… Continue reading Compassion for all: Adrianne shares how friendship grew from the life-altering Boston Marathon Bombing
A bold choice to fight epilepsy
As originally seen on the Tampa General Hospital News Center website It was scary enough for Letitia Browne-James’ parents to witness their child’s epileptic seizures. But they were also frightened when a doctor suggested brain surgery for their 12-year-old. “My parents said ‘no way,’” Browne-James said. “It was a very scary thought.” They tried medications,… Continue reading A bold choice to fight epilepsy
What can you do to challenge ALS in May?
It’s been 23 years since the U.S. Congress first recognized May as ALS Awareness Month in 1992, and while progress towards new treatments has been slower than we’ve all hoped, a lot has still happened since then. In 1995, Riluzole, the first treatment to alter the course of ALS, was approved by the FDA. In… Continue reading What can you do to challenge ALS in May?
Making sure conferences are “Patients Included”
Picture this: you’re a medical professional and are about to open the doors to a conference you’ve spent years pulling together. You’ve booked your venue, have your sponsors lined up, got top headliners to give keynotes, picked your Twitter hashtag and have invited every industry pro to be a part of the event. In walk… Continue reading Making sure conferences are “Patients Included”
Throwback Thursday: Paul discusses what happens when trial participants realize they hold the power
Just about a year ago, PatientsLikeMe’s Paul Wicks, PhD, Vice President of Innovation, wrote a blog post about what happens when trial participants realize they hold the power in clinical trials. He began his early experiences with ALS patients and clinical trials, but then fast-forwarded to how PatientsLikeMe members have replicated a clinical trial, started… Continue reading Throwback Thursday: Paul discusses what happens when trial participants realize they hold the power
Update and results – the Patient Voice Analysis study
About a year ago, the PatientsLikeMe Parkinson’s disease (PD) community started something totally different: a study to compare the sound of their voices to their self-reported PD Rating Scale (PDRS) on PatientsLikeMe. It’s called the Patient Voice Analysis (PVA), and we teamed up with you, Max Little, Ph.D. and Sage Bionetworks to get it done.… Continue reading Update and results – the Patient Voice Analysis study
“Don’t go it alone” – IPF member Christine shares about her health journey
Christine_Williams was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2009, and ever since, she’s been managing a “rollercoaster ride that’s terrifying and not fun.” But she’s connected with your community on PatientsLikeMe for inspiration and was even referred to a new medical center to be evaluated for a lung transplant by her “rehabilitation buddies.” Below,… Continue reading “Don’t go it alone” – IPF member Christine shares about her health journey