ALS Archives

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

It’s been two years!! ALS Community Report

PatientsLikeMe was born of a passion to provide the best tools for patients to participate in their own care, share experiences and change the way medical research is done.Thanks to our members and the dedication of our growing team, our first community, ALS, has now been open to the public for two years! The community… Continue reading It’s been two years!! ALS Community Report

Does It Work? Lithium and ALS

by James Heywood Update (March 7, 2008): PatientsLikeMe ALS Lithium Research released. Does it work? On February 12th of this year, Proceedings of the National Academy of Sciences (one of the leading science journals) published a paper entitled — Lithium Delays Progression of Amyotrophic Lateral Sclerosis. After 10 years researching ALS, I believe it is… Continue reading Does It Work? Lithium and ALS

PatientsLikeMe at the Toronto ALS/MND Symposium

This year PatientsLikeMe was the major sponsor of the 18th International ALS/MND Symposium held in Toronto, Canada. Research scientist Paul Wicks, marketing officer Lori Scanlon, and community liaison Emma Willey were all in attendance to tell people about the site. We first started telling the ALS/MND community about us at the Yokohama conference in 2006,… Continue reading PatientsLikeMe at the Toronto ALS/MND Symposium

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

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

Excessive Yawning or Constant Yawning in ALS/MND

The first thing we experience about yawning is an urge to do so, one that can be so hard to suppress that we end up gulping down an extra serving of air when we’re trying to appear interested, or polite, or awake. But what if you yawned even if you weren’t tired, or bored? What… Continue reading Excessive Yawning or Constant Yawning in ALS/MND