5 posts tagged “mental health conditions”

PatientsLikeMe Researchers Score a Hat Trick

Posted July 11th, 2012 by

The term “hat trick” originated in 1858 after English cricketer HH Stephenson successfully bowled out three batsmen with consecutive bowls and he was presented with a hat to commemorate his feat. In June, PatientsLikeMe’s research team scored a hat trick of our own by publishing three new studies in scientific journals in just four days, bringing our total number of published studies to 27.

An Image from the Third Published Study in Our June Hat Trick:  "Mining Social Network Data for Biomedical Research"

As employees at a start-up company, we all wear many hats – literally, as you can see from the photos below, and figuratively, in terms of our responsibilities as scientists, product developers and business people across different disease areas. For instance, in this trio of papers, we address research issues in multiple sclerosis (MS), ALS and mood disorders. Click on the study titles below to read the full papers and a big thank you to all of our patients for sharing your voices and making this research possible.

Monday, June 18th – First PatientsLikeMe study published.

The multiple sclerosis rating scale, revised (MSRS-R): Development, refinement, and psychometric validation using an online community

Members of our MS community will be familiar with the MS Rating Scale (MSRS), which is their primary outcome measure. We developed it a few years ago to address an unmet need for a brief, easy-to-use rating tool that covered more areas than simply walking. In collaboration with a neurologist, we sketched out our first version of the MSRS, which has now been used over 90,000 times by our 28,000+ MS members to share your progress, track your relapses and disability, and gain insight into how your treatments are working.

PatientsLikeMe Research Scientist Dr. Tim Vaughan

Published in the Journal of Medical Internet Research, this new study describes work to improve the MSRS to a revised version (the MSRS-R) and establish that the instrument measures what it is supposed to measure (reliability), that it correlates well with other instruments (concurrent validity) and that it allows differences between groups of patients (sensitivity to change). This process of “validating” a patient-reported outcome (PRO) is an important step in increasing the value of the data that we produce for researchers. Studies are underway right now to continue improving the instrument and compare it to doctors’ ratings of patient disability.

As with all outcome measures we develop at PatientsLikeMe, we have licensed the MSRS-R for anyone to use freely in their own research studies. This work also serves as a foundation for our resident predictive modeler and particle physicist Dr. Tim Vaughan to begin work on predicting the course of an individual patient’s disease using your MSRS scores!

Tuesday, June 19th – Second PatientsLikeMe study published.

E-mental health: A medium reaches maturity

PatientsLikeMe Research & Development Director Dr. Paul Wicks

The Internet has transformed many aspects of healthcare in the past decade, and to open a special issue on “E-Mental Health” in the Journal of Mental Health, our R&D Director Dr. Paul Wicks was commissioned to write a special editorial.

Available by clicking the link above, the paper describes the progress of online systems for people with mental health issues, from government-provided resources (such as this UK NHS Choices site about self-harm) to commercial, computerized cognitive-behavioral therapy programs like “Beating the Blues” and collaborations between different sectors of the health system. For instance, in the UK if you Google “suicide” there is a special message from the Samaritans mental health support service right at the top of the page.

At PatientsLikeMe, our vibrant mood community has been active since 2008, and our published research has shown that it provides improved outcomes to many of our members.

Thursday, June 21st – Third PatientsLikeMe study published.  Hat trick completed.

Mining Online Social Network Data for Biomedical Research: A Comparison of Clinicians’ and Patients’ Perceptions About Amyotrophic Lateral Sclerosis Treatments

As you probably know, the story of PatientsLikeMe starts with ALS and trying to find treatments that can improve the symptoms, including anxiety, stiffness, or constipation. Back in 2003, ALS nurse Dallas Forshew and Dr. Mark Bromberg published a small study describing massive variation in the way ALS doctors from 39 specialist centers treat the symptoms of ALS. This data was also described in our 2010 TEDx Berkshires talk about the value of crowd-sourced data.

PatientsLikeMe Research Assistant/Software Engineer Shivani Bhargava

In this new study published in the Journal of Medical Internet Research, we collaborated with researchers at the University of Utah to compare the passively collected ALS patient data from our system with what the clinicians said. Although they agreed in most areas, there were split opinions too, particularly when it came to the perceived level of efficacy that these treatments had. Click the link above to read more.

This paper is also notable for being our own Shivani Bhargava’s very first scientific publication! Shivani started with us as an intern, then became a research assistant, and has recently made a career change to start studying as a software engineer. A true renaissance woman!


Mike Wallace, Depression and Me

Posted June 11th, 2012 by

In honor of Men’s Health Week, we are pleased to present a guest post by PatientsLikeMe member tiredoftired, a young man who has been living with major depressive disorder since 2007.  Don’t miss this moving essay about how Mike Wallace’s passing earlier this year impacted and inspired him.

As I was driving to therapy on an April afternoon, I heard a news report that Mike Wallace, an original host of the television show 60 Minutes, had passed away.  I was intrigued when the short segment highlighted Wallace’s accomplishments in his battle with depression.  I was only somewhat familiar with the show, but it was obvious from the report that he had a decorated career as a journalist and his professional accomplishments could have easily taken the full slot.  Having struggled with depression myself, I felt compelled to investigate his life further.

Mike and Mary Wallace.  Photo Courtesy of CBS News.

For those of you who are unfamiliar with his work as I was, Wallace was a pioneer of the newsmagazine format, which shaped journalistic television.  He was a pit bull of a correspondent; with his aggressively confrontational approach, he posed direct questions that others were too afraid to ask, often leaving the subject shaken.  Wallace interviewed some of the most eminent, and even fearsome, people and did not hold back on his interrogation-like technique.

But Wallace said that his greatest accomplishment in life was that he survived.  Wallace endured several bouts of severe depression throughout his life, the first of which left him in such emptiness and despair that he attempted suicide as a means of escape.  He used his personal experiences with depression to share ideas that would give other sufferers advice and hope.  Reading about his life made me feel the same comfort he provided to others when he was alive, and I have become encouraged by lessons he transmitted.  Here are the top four:

  • There is no shame in depression: Wallace constantly repeated that depression does not signify an emotional weakness.  The pain, inability to cope and despair are unfathomable to those who have not experienced depression.  It is not a sadness that is surmountable by sheer willpower.  Aside from reassuring sufferers that their pain and disabilities were justified, it comforted them by seeing someone well-respected using his high-profile position to dissolve social stigma.
  • There is no shame in asking for help: The stigma can prevent people from seeking help and make them embarrassed that, unlike others, they are unable to push through sadness themselves.  Wallace said that the single most important thing you can do is to go and talk to someone.  He stressed that it is impossible for one to handle alone, and he encouraged people to seek therapy and take medication, as well as emphasizing the importance of social support from family and friends.
  • You are not alone: During depressive episodes, Wallace often talked to two close friends that also experienced depression.  By talking to those who could truly empathize, he felt comforted and validated.  Not only was he reassured that what he was feeling was normal, they were able to give him valuable insight and ideas.
  • There is a light at the end of the tunnel: Wallace’s friends also gave him hope.  He saw that they had been through the darkness of depression and survived.  And he passed along that message to others. As bad as it seems now, he told people, look at how he emerged from that same prison and went on to live a happy, productive life.

Mike Wallace has inspired me to perpetuate these messages and give others the same comfort and hope he gave me.  Depression is a real medical illness and pursuing treatment is nothing to be embarrassed about. With the help of mental health professionals and a strong support system, we have the ability to fight through the darkness.  By doing that, we can do more than just survive – we can build productive and meaningful lives.

Learn more about Mike Wallace’s struggle with depression in this candid CBS interview from 2006. Also, if you’re living with depression yourself, we invite you to join PatientsLikeMe’s depression community and connect with more than 11,000 others like you.