6 posts tagged “major depressive disorder”

PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships

Posted October 19th, 2015 by

Cambridge, MA, October 19, 2015—PatientsLikeMe has named 14 members to its patient-only 20152016 Team of Advisors and challenged them to work through an issue that’s central to everyone in the healthcare system: how to redefine patient partnerships. The team will be focused on rethinking what it means for patients to be partners, and on establishing new ways for the healthcare industry to connect with patients to deliver better care.

PatientsLikeMe CEO Martin Coulter said that in an era when patients must be front and center in healthcare discovery and development, the group’s mission is vital to every patient, pharmaceutical company, regulator, payor and provider. “This advisory team includes some of the strongest patient advocates we have ever met. Their experience can empower other patients, and help those serving patients understand what it means to be a good partner. The team’s work will help create a stronger foundation for a more equal and participatory system of care.

More than 1,400 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. The nearly equal mix of men and women are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), bipolar II, cancer, Type 1 diabetes, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lupus, major depressive disorder (MDD), multiple sclerosis, Parkinson’s disease and post traumatic stress (PTS). Members named to the team include: Christel Aprigliano, Craig Braquet, Jeff Demers, Cyrena Gawuga, David Gewirtz, Phyllis Marchand, John Michael, Gus Prieto, Laura Roix, Patti Sanner, Allison Silensky, Angela Stogner, Doug Thornburg and Peggy Zuckerman.

Christel Aprigliano is living with Type 1 diabetes and believes that the key to a good partnership is a focused, data-driven discussion on what matters most to patients. “Patient reported outcomes are crucial to the healthcare conversation. The more information we can share about what life is like for patients every day, the more questions we can ask each other, and the better we can help patients live well with the disease they have.”

The 2015-2016 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times in the coming months. This is the second Team of Advisors the company has formed. Last year, the inaugural group provided feedback to the research team and published a best practices guide that outlines new standards for how researchers can meaningfully engage patients throughout the research process.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 350,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


Depression Awareness Month- What does it feel like?

Posted October 26th, 2014 by

Here at PatientsLikeMe, there are thousands of people sharing their experiences with more than a dozen mental health conditions, including 15,000 patients who report major depressive disorder and 1,700 patients who report postpartum depression. What do they have to say? This word cloud has some of the most commonly used phrases on our mental health forum.

It gives you a feel of the many emotions, concerns and thoughts that surround the topic of mental health. But the best way to increase awareness and knowledge, we believe, is to learn from real patients. To help show what it’s like to live with depression, we thought we’d share some of our members’ candid answers to the question, “What does your depression feel like?”

  • “My last depressive state felt like I was in a well with no way to get out. I would be near the top, but oops….down I go. I truly felt that I would not be able to pull myself out of this one. I felt hopeless, worthless and so damn stupid, because I could not be like other people, or should say what I think are normal people.”
  • “It feels like living in a glass box. You can see the rest of the world going about life, laughing, bustling about, doing things, but they can’t see you or hear you, or touch you, or notice you at all, and you cannot remember how to do the things that they are doing, like laughing, and just being ordinary and satisfied with it. You are totally alone although surrounded by people.”
  • “It feels like walking in a dimly lit hallway (or totally black, depending on the severity) with no exit in sight and no one else around.  You keep walking hoping to come to the end, trying to feel along the walls for some sort of door that will take you out of this tunnel, but to no success. At the beginning you feel like there has to be an end or a door of some sort – something to get you out, but as you keep walking, your hopes damper by each step. You try yelling for help, but no one hears you.”
  • “Depression is very much like feeling as if I have no arms nor legs and (what’s left of) my body is upright in the middle of a road on a cold, dark, foggy morning. I can’t run. I can’t walk or crawl. In fact, I have no options. I have no memory of how I came to be there. I know I’m going to die, I don’t know when or exactly how. There’s nobody around who sees me or understands my situation. If somebody gets close by and I scream, they’ll run away in fear. My family has no idea where I am and I’m alone… except for the headlights down the road.”

Can you relate to any of these descriptions? If you’ve battled depression, we encourage you to join our growing mental health community and connect with patients just like you.

Share this post on Twitter and help spread the word for depression.


Add Your Voice During National Recovery Month

Posted September 10th, 2012 by

National Recovery Month Takes Places Every September

Are you in recovery from an addiction or mental health disorder – or do you know someone who is?  The theme for National Recovery Month 2012, sponsored by the Substance Abuse and Mental Health Services Administration (SAMHSA), is “Join the Voices for Recovery: It’s Worth It!”

There are several different ways to participate in this annual event, which promotes the societal benefits of prevention and treatment for mental and substance use disorders:

Now in its 23rd year, National Recovery Month was founded on the belief that we should celebrate the gains made by those in recovery, just as we would with those who are managing other health conditions.  The goal is to spread the positive message you can live a healthy and rewarding life with the aid of treatment and mental health services.

Are you looking to start on the road to recovery?  Reclaim your life by calling SAMHSA’s National Helpline (1-800-662-HELP), where you can be assisted in both English and Spanish.  If you’re already in recovery, find solidarity and support by connecting with others like you at PatientsLikeMe.  We have thousands of patients sharing their experiences with numerous disorders, including:

Exchange stories and tips – as well as in-depth treatment evaluations – with those who can truly relate today.


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.


It’s the Season for Seasonal Affective Disorder

Posted November 15th, 2011 by

Now that daylight savings time has ended, the days are shorter, and before you know it, it’s nightfall.  Has this affected your mood?

Seasonal affective disorder (SAD), also known as seasonal depression, is a condition marked by a period of depression that occurs during the same season year after year.  In most cases, that season would be fall through winter (when there is less sunlight), but for some people, SAD can occur during spring or summer.

An Example of a Light Therapy Box Used to Treat SAD

One of the best ways to learn “what’s normal and not normal?” with SAD is to compare your experiences with other patients. There are 446 patients with SAD at PatientsLikeMe, with 85% of them female and 15% male.  A commonly reported treatment is light therapy, or the use of a special light box that exposes you to bright light.  This mimics the effect of natural outdoor light and appears to cause a change in brain chemicals that positively affects your mood.  (Does it really work?  Check out the 27 treatment evaluations for light therapy that our patients have submitted.)

What’s it like to live with SAD?  Here are some first-hand reports from members of our mental health community, who answered the question “What are your SAD symptoms?

  • “My symptoms tend to be worsening depression and anxiety.  There are no ‘indicator’ symptoms for me – meaning I don’t realize necessarily ‘Oh I’m starting to feel SAD, crap!’  But all of my Major Depressive Episodes (five so far since I was 20) have occurred in November and December.  And looking back, I can see a downward trend in especially depressive symptoms getting worse starting in mid October – such as depressed mood, more frequent crying spells, fatigue, worse insomnia, headaches worsen, weight and appetite changes, and urges to self-injure.  Three of my Major Depressive Episodes led to suicidal thoughts and short hospitalizations.  The other two, I had frequent suicidal thoughts but did not feel in danger of acting upon them.” – Member with panic disorder
  • “[Symptoms are] mild now, but they ran the spectrum from comatose to the walking functional. Kids don’t understand, and our school bus arrived at 6:00 a.m. Needless to say they weren’t hungry, food on the bus = school contraband, so I’d whip up scrambled eggs with cheese and wrap them in a taco shell and tell them to sneak a bite when they got hungry. They just threw them in the bushes for the local dogs to eat. Then I’d watch TV and answer the ever increasing phone calls all day long. If I felt OK, I’d start to prepare for the tornado that was spring.  Nowadays since I don’t have so much responsibility, my symptoms seem mild, but that could change depending on the winds of life events.” – Member with bipolar II disorder
  • “I think it varies year to year in terms of severity.  The March/April period is characterized by an increase in my anxiety levels together with restlessness and restrictive eating. The September/October period is characterized by an increase in my feelings of sadness along with intense carbohydrate cravings and a need to sleep more.  Both periods are marked by problems concentrating.  I notice that the light box really helps with the carbohydrate cravings. I think it might even make me less hungry overall.  It’s not that the cravings go away entirely, but instead they are dampened to the level where I *don’t* find myself eating cookies without realizing how I got them.” – Member with major depressive disorder

Wondering what else they patients have to say about SAD?  Or think you might experience the condition yourself?  Join PatientsLikeMe and take part in this ongoing SAD forum discussion.


Mental Illness Awareness Week: What Does Depression Feel Like?

Posted October 4th, 2011 by

It's Mental Illness Awareness Week, Sponsored by the National Alliance on Mental Illness

Since 1990, the first week of October has been recognized as National Mental Illness Awareness Week by the U.S. Congress. Under the leadership of the National Alliance on Mental Illness (NAMI), mental health advocates across the country are joining together this week to sponsor numerous awareness-raising activities based on the theme of “Changing Attitudes, Changing Lives.”

Here at PatientsLikeMe, we have thousands of patients sharing their experiences with more than a dozen mental health conditions, including 7,699 patients who report major depressive disorder and 1,638 patients who report postpartum depression. What do they have to say? Below is a “word cloud” of some of the most commonly used phrases on our mental health forum. The most popular single word, by the way, is “meds.”

A Word Cloud of Some of the Most Commonly Used Phrases in Our Mental Health Forum

This graphic (which you can click to enlarge) gives you a feel of the many emotions, concerns and thoughts that surround the topic of mental health.  But the best way to increase awareness and knowledge, we believe, is to learn from real patients.  According to NAMI, one in four adults experiences a mental health problem in any given year, while one in 17 lives with a serious, chronic mental illness.

To help show what it’s like to live with depression, we thought we’d share some of our members’ candid answers to the question, “What does your depression feel like?”

  • “My last depressive state felt like I was in a well with no way to get out.  I would be near the top, but oops….down I go.  I truly felt that I would not be able to pull myself out of this one.   I felt hopeless, worthless and so damn stupid, because I could not be like other people, or should say what I think are normal people.”
  • “It feels like living in a glass box.  You can see the rest of the world going about life, laughing, bustling about, doing things, but they can’t see you or hear you, or touch you, or notice you at all, and you cannot remember how to do the things that they are doing, like laughing, and just being ordinary and satisfied with it.  You are totally alone although surrounded by people.”
  • “It feels like walking in a dimly lit hallway (or totally black, depending on the severity) with no exit in sight and no one else around.  You keep walking hoping to come to the end, trying to feel along the walls for some sort of door that will take you out of this tunnel, but to no success.  At the beginning you feel like there has to be an end or a door of some sort – something to get you out, but as you keep walking, your hopes damper by each step.  You try yelling for help, but no one hears you.”
  • “Depression is very much like feeling as if I have no arms nor legs and (what’s left of) my body is upright in the middle of a road on a cold, dark, foggy morning.  I can’t run.  I can’t walk or crawl.  In fact, I have no options.   I have no memory of how I came to be there.  I know I’m going to die, I don’t know when or exactly how.  There’s nobody around who sees me or understands my situation. If somebody gets close by and I scream, they’ll run away in fear.  My family has no idea where I am and I’m alone… except for the headlights down the road.”

Can you relate to any of these descriptions?  If you’ve battled depression, we encourage you to join our growing mental health community and connect with patients just like you.  Also, stay tuned for another blog later this week about the types of data being shared by our mental health members.