Want to connect with and learn from others with ALS? Join PatientsLikeMe Now! (It’s free) “Social media is the MOST important means of socialization, communication and education for patients and their caregivers today, particularly with a disease like ALS where our minds are still sharp and active inside our failing bodies. Sites like PatientsLikeMe, Facebook… Continue reading How Social Media Helped Me Adjust to My New Life: An ALS Patient Essay
Category: ALS
The Importance of Open Access: An Interview with Patient Advocate Graham Steel
A native of Glasgow, Scotland, Graham Steel is a longtime “Guest Researcher Member” of PatientsLikeMe. Following the death of his brother Richard at the age of 33 from a rare condition known as variant Creutzfeldt-Jakob Disease (vCJD), Graham became involved in patient advocacy work, and most recently, in lobbying for open access to published scientific… Continue reading The Importance of Open Access: An Interview with Patient Advocate Graham Steel
The “Immense Benefits” of Online Health Reporting: An Interview with ALS Study Author Dr. Thomas Meyer
Earlier this month, we told you about a new study showing that ALS patients reporting their health status over the Internet (using a rating scale known as the ALSFRS-R) is just as reliable as a trained nurse rating the patient’s score. Now, we’d like to share our interview with lead study author Dr. Thomas Meyer,… Continue reading The “Immense Benefits” of Online Health Reporting: An Interview with ALS Study Author Dr. Thomas Meyer
ALS Patients Reporting Their Health Status over the Internet Just as Reliable as a Clinician in a Hospital
At PatientsLikeMe we’ve been collecting self-reported data about patients with ALS (PALS) since 2006 – over 5,000 PALS to be exact! ALS is a disease that causes muscle wasting in the arms, legs, head and chest, which leads to problems walking, eating, and even communicating. However, unlike a disease like diabetes where there’s a blood… Continue reading ALS Patients Reporting Their Health Status over the Internet Just as Reliable as a Clinician in a Hospital
Meet ALS “Treat Us Now” Steering Committee Member Tom Murphy
You may remember our interview with ALS advocate Debra Quinn from last fall. Today, we’d like to introduce you to another ALS patient activist in our midst: Tom Murphy, a PatientsLikeMe member since January 2011. As part of the ALS Treat Us Now nonprofit group, Tom and several other ALS patients around the country have… Continue reading Meet ALS “Treat Us Now” Steering Committee Member Tom Murphy
FDA’s New Guidance on Patient-Reported Outcomes
We’re big fans of patient-reported outcomes (PROs) here at PatientsLikeMe, defined by the Food & Drug Administration (FDA) as: “A measurement based on a report that comes directly from the patient about the status of a patient’s health condition without amendment or interpretation of the patient’s response by a clinician or anyone else.” The self-report… Continue reading FDA’s New Guidance on Patient-Reported Outcomes
PatientsLikeMe Acquires Online Pain Management Company, ReliefInsite
Today’s news release announcing acquisition of ReliefInsite. Want to receive future announcements? Sign up for our RSS feed on the press page. – – – FOR IMMEDIATE RELEASE PATIENTSLIKEME ACQUIRES ONLINE PAIN MANAGEMENT COMPANY, RELIEFINSITE20,000 Patients Reporting Moderate to Severe Pain on PatientsLikeMe Cambridge, MA and New York City, NY – February 16, 2010 –… Continue reading PatientsLikeMe Acquires Online Pain Management Company, ReliefInsite
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
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