Elizabeth is a member of the 2018 Team of Advisors living with MS and a self-described research addict. Here’s what she had to say about her experience contributing to research and why “it’s powerful to use a devastating diagnosis for good.” I’ve always been a sucker for a focus group. Give me some free pizza… Continue reading Confessions of a research study addict: “It’s powerful to use a devastating diagnosis for good.”
Category: Research
Marijuana and MS: Get the scoop
From legality to availability, recreational use and potential use as treatment, marijuana is a hot topic. In the MS forum, members are talking about marijuana and its potential to relieve symptoms of MS like pain, tremor and spasticity. We wanted to know more, so we asked our Health Data Integrity team to take a look… Continue reading Marijuana and MS: Get the scoop
Want to know more about Radicava (edaravone)? Here’s a snapshot:
With the recent FDA approval of Radicava (edaravone), we wanted to know more about how it works and what it means for patients living with ALS. We asked Maria Lowe, Pharm.D., BCPS, and our Health Data Integrity team, to give us a snapshot of the drug, how it’s used and what you should know. Maria’s rundown… Continue reading Want to know more about Radicava (edaravone)? Here’s a snapshot:
It’s Clinical Trials Day, and patients are driving change
Today is Clinical Trials Day – celebrated to bring more attention to public health and also to recognize the contribution of the patients and healthcare professionals who make clinical research possible. At PatientsLikeMe, it’s members who are changing the way clinical trials are designed. Bringing the patient voice to clinical trials has long been part… Continue reading It’s Clinical Trials Day, and patients are driving change
How Social Media Is Changing Research (Part II): A Guest Post by MS Clinical Trial Participant and Blogger Jeri Burtchell
Today’s guest post is written by PatientsLikeMe member Jeri Burtchell, who has been living with multiple sclerosis (MS) for 13 years. A tie dye apparel store owner and mother of two, she writes a blog entitled “Gilenya and Me: My Story of Being an MS Patient, a Hypochondriac and a Guinea Pig.” Her patient advocacy… Continue reading How Social Media Is Changing Research (Part II): A Guest Post by MS Clinical Trial Participant and Blogger Jeri Burtchell
How Social Media Is Changing Research (Part I): A Guest Post by MS Clinical Trial Participant and Blogger Jeri Burtchell
Today’s guest post is written by PatientsLikeMe member Jeri Burtchell, who has been living with multiple sclerosis (MS) for 13 years. A tie dye apparel store owner and mother of two, she writes a blog entitled “Gilenya and Me: My Story of Being an MS Patient, a Hypochondriac and a Guinea Pig.” Since the original post,… Continue reading How Social Media Is Changing Research (Part I): A Guest Post by MS Clinical Trial Participant and Blogger Jeri Burtchell
Learning Your Personal Genetics: An Interview with PGen Study Participant PF Anderson
Recently, PatientsLikeMe sent a message to our members about an opportunity to participate in the Impact of Personal Genomics (PGen) Study, led by researchers at Harvard and the University of Michigan. Each of the 1,000 study participants receives personal genomic testing services at a significantly subsidized discount. Using a series of surveys, the investigators will… Continue reading Learning Your Personal Genetics: An Interview with PGen Study Participant PF Anderson
Gambling in online PD patients higher than previously reported
When most people think of Parkinson’s disease (PD), they think of a shuffling gait, a shaky hand, and slowness of movement. As awareness has increased of the non-movement symptoms of PD, such as hallucinations and depression, we’ve seen the psychological consequences the disease can have too. More recently, studies in the scientific literature have been… Continue reading Gambling in online PD patients higher than previously reported
Let’s make clinical trials more rewarding for patients
I came across this Wall Street Journal article earlier this week which details how patients with life-changing illnesses are using online services such as EmergingMed to help them enroll in clinical trials. The article points out that only 3% of adult cancer patients participate in trials, citing lack of awareness as a crucial factor. They… Continue reading Let’s make clinical trials more rewarding for patients
ALS Patients: Give us the truth about cognitive change
One of the things we’re most proud of at PatientsLikeMe is our ability to rapidly carry out research. There are some obvious benefits online: patients can can take part whenever they want, take as much time as they need (often using assistive technology), and are more likely to be open and honest about subjects that… Continue reading ALS Patients: Give us the truth about cognitive change