Did you know that one in four adults – or approximately 57.7 million Americans – experiences a mental health problem in any given year? Or that one in 17 lives with a serious, chronic mental illness?
Since 1990, National Mental Illness Awareness Week has been recognized by the U.S. Congress as a time for mental health advocates and patients to join together for various awareness-raising activities. Sponsored by National Alliance on Mental Illness (NAMI), the goal of this week is to transform the way we think about mental illness, which is defined by NAMI as “a medical condition that disrupts a person’s thinking, feeling, mood, ability to relate to others and daily functioning.”
Like any other medical condition affecting a particular organ, mental illness is not caused by personal weakness or character defects, and it can affect individuals of any age, race, religion or income. As an example, some famous people who are known to have lived with mental illness include Abraham Lincoln, Winston Churchill, Gandhi, Tennessee Williams and Mike Wallace (who was eulogized by one of our members last June). Below is a new PSA ad for National Mental Illness Awareness Week 2012 that focuses on some of these legendary icons, stressing that “you are not alone in this fight.”
In addition to exchanging in-depth treatment evaluations about the effectiveness and side effects of commonly prescribed medications such as Cymbalta, Klonopin or Wellbutrin, our members are connecting and supporting each other daily in our Mental Health and Behavior Forum. Currently, there are more than 39,000 participants and more than 333,000 posts in this highly active forum, where you can find answers, empathy, humor and thought-provoking conversations day or night.
In honor of this month’s Mental Illness Awareness Week, here’s a snapshot of what’s happening in our PatientsLikeMe Mood community. Launched in 2008, the community now has more than 18,000 patients. Below are some interesting facts about the community, so please read and share on!
DID YOU ALSO KNOW…
You can search for patients under 15+ diagnosis categories, including depression, bipolar, obsessive-compulsive disorder (OCD), post-traumatic stress disorder (PTSD), anxiety, addiction to tobacco, addiction to alcohol, eating disorder and more.
Patients are using more than 1700 treatments, including prescription drugs, supplements, over-the-counter medications, life-style modifications, therapies, and more.
The top lifestyle modification reported by our patients is positive self talk; and sleep is the #1 exercise cited.
Some of the top topics “tagged” in our forum discussions to date include specific treatments (like Lamictal, Lithium, Wellbutrin and Seroqul), as well as borderline personality disorder, coping, anger and journaling.
Posted by Lori Piscatelli Scanlon | December 31, 2009
As 2009 comes to an end, we want to take this opportunity to thank all of our members, partners and general fans for another great year. Here’s a recap of some of the exciting happenings at PatientsLikeMe these past 12 months. Wishing you all a Happy New Year!
Community Milestones
This year, the 15+ disease communities at PatientsLikeMe became an online home to more than 50,000 members. The fibromyalgia community was expanded this past fall to include patients with chronic fatigue syndrome, and we announced a new community scheduled to launch early next year for people with epilepsy. In addition to celebrating our communities’ awareness days and months within the site and right here on the blog (including Fibromyalgia Awareness Day, MS and PD Awareness Months, National HIV Testing Day and World AIDS Day), many of our members also participated on PatientsLikeMe teams in walk/run efforts to raise awareness and money in the name of their disease. Congrats to the 40+teams walking at events to support non-profit organizations like ALS Association, National MS Society, NAMI, Parkinson’s Alliance, APDA, and the MS Society of Canada. The real-time sharing and learning happening on PatientsLikeMe was also highlighted in the report series called The Patient Voice (starting with inpatient therapy for people with Mood conditions). Check out highlights from all these programs on these videos from the Fibromyalgia, Parkinson’s, Multiple Sclerosis and Mood communities.
“I find this site so beneficial in looking for the tools to cope with the disease. People post research and real-life patient experiences of current trials and treatments. Hope is a major focus of PLM and I encourage others to join. We are strong in numbers and we have a voice.”
“PLM is a wonderful way to express what and how to live with this disease. It has changed my life for the better, have met wonderful individuals and we have shared, cried and grown by reaching out and expressing from our hearts, have made wonderful friends and have learned so much.”
Throughout the year, the team has also shared insights via videos (like this series on the history of ALS or a recap of a study on the antidepressant Amitriptyline) and various presentations (such as an overview of our work at the at Eurordis AGM in Athens and updates on our lithium study at the International ALS/MND Symposium). In addition to working on the development of our new communities, the team took additional steps to incorporate genetics into the PatientsLikeMe platform. By participating in new partner studies (such as 23andMe and NEALS) and utilizing new product upgrades, including the launch of the Genetic Search Engine, patients are learning more about their condition and coming closer to answering the question: “Given my status, what is the best outcome I can expect to achieve, and how do I get there?”
Keep your eyes out for more to come in 2010 as our R&D team rolls out more insights and outcomes measurements (like the Quality of Life scale in HIV), more improvements to the PatientsLikeMe platform, and cutting edge research in the peer-reviewed scientific literature.
The Business Side
As Ben said in a recent blog post, “we can’t have a business without you [the patient] and our communities can’t exist to help patients without a business.” Throughout the year, the PatientsLikeMe executive team traveled around the world to present to industry partners, researchers, healthcare professionals and government leaders about the power of real-world patient data-sharing. Here are some highlights from ’09:
Government: Piloted in our MS community this year, PatientsLikeMe members now have the ability to voluntarily report adverse events directly to the FDA; in fact, Jamie recently presented about adverse event reporting at an open FDA hearing on the “Promotion of FDA-Regulated Medical Products Using the Internet and Social Media Tools.” PatientsLikeMe was also one of the collaborating organizations responsible for writing the Declaration of Health Data Rights and launching HealthDataRights.org this past June. Finally, Jamie testified before the National Committee for Health and Vital Statistics, and gave an exciting rapid-fire presentation on the future of medicine at the Gov 2.0 Summit.
Innovation: As a leader in Health 2.0, PatientsLikeMe executives are often asked to speak at various industry events. Check out photos of Ben speaking at The National Summit and stay tuned for videos from Jamie’s presentation at TEDMED and David’s presentation at Bil:Pil. You can also tune in to our live event tweets on the PatientsLikeMe Twitter account in 2010.
Media Highlights: PatientLikeMe members, data and executives were also featured in media mentions throughout 2009, including WIRED, Forbes, U.S. News & World Report, Fox Business Live, Newsweek, New York Times, as well as Seed magazine, Nature Biotechnology and Neurology Today.
Posted by Lori Piscatelli Scanlon | September 1, 2009
We are excited to present the first member video for the PatientsLikeMe Mood community and what better way to kick it off than with one that represents the voice of the patient.
In June, we launched The Patient Voice with the inaugural report on inpatient therapy, a topic often discussed by our Mood community members. At the time of the report, 63% of patients on our site reported an efficacy of “moderate” or “major” for inpatient therapy.
Many patients have already benefited from the information in the report, so we decided to create a video that highlights our patient members’ tips and experiences. Check it out on our YouTube or Facebook page, but if you visit the latter don’t forget to become our fan!
If you want to know more about patients’ experiences with inpatient therapy, you can download the full report here. It includes even more tips and personal stories, interesting facts about the PatientsLikeMe community and a worksheet that will help you make the most out of your hospital stay. Of course, none of this would have been possible if patients like you were not willing to share. We are always eager to hear what you have to say, so please share on.
Once again, special thanks to our summer intern, Shane, for his work on the video!
Yesterday, we announced a new report called The Patient Voice for Inpatient Therapy, which highlights patients’ top tips for having a positive inpatient therapy experience. Maureen Oakes, community manager for PatientsLikeMe Mood Conditions Community (for people with depression and other mood conditions), recently interviewed 3-star member, Mountabora, about her experiences with hospitalization. Here’s what she had to say:
(Maureen) You note in your member profile that you have been hospitalized a few times. What were those experiences like?
(Mountabora) Being in a psychiatric hospital is kind of like being at summer camp. You’re away from home, living in close quarters with strange people, and participating in structured group activities which may or may not have a purpose. There are a lot of rules, and you lose privileges if you don’t follow them. You have to get up way too early in the morning and eat three meals a day at the cafeteria.
There’s a lot of emphasis on learning coping skills, typically through classes and worksheets. There’s also a lot of emphasis on medication; most patients are on at least two or three psychoactive drugs. You go to therapy and you see a psychiatrist, but much more often than you would if you weren’t hospitalized. It’s basically a condensed version of what you’d get as an outpatient, in a controlled environment.
I’ve been treated at six different hospitals in four states over the last ten years, and I’ve had both wonderful and horrible experiences. The state hospital I went to was more like a prison than a hospital. Patients were restrained and drugged against their will, the nursing staff obviously didn’t care, and I had to wait days to see a psychiatrist and then threaten to take them to court before they’d discharge me. The private psychiatric hospitals were much better, with specially trained art, exercise, and family therapists, productive classes and groups, and lots of one-on-one time with nurses, therapists, and psychiatrists. Unfortunately, this seems to be a situation where you really do get what you pay for.
(Maureen) If you could tell other patients one thing about having a positive inpatient therapy (or hospitalization) experience, what would it be?
(Mountabora) Hospitalization is very expensive, so treat it like you would any major purchase. Discuss options with your psychiatrist and have a clear idea of why you’re going in and what you’re expecting to get out of it. Once you’re there, take full advantage of the services the hospital offers. Learn as much as you can from both staff and fellow patients, participate fully in groups and individual therapy, and make the most of the (hopefully) peaceful and structured atmosphere.
I also would recommend that anyone with a serious mental illness take some time to learn about patients’ rights in their state or country. You never know when you’ll be put into a situation where you have to advocate for yourself.
(Maureen) In a our new report, The Patient Voice on Inpatient Therapy, we summarize top themes cited by our community members regarding their positive inpatient therapy experiences. Do you have anything to add regarding these themes?
(Mountabora) I really wish hospitals would put more emphasis on coordination of care right from the start. Almost every time I’ve been hospitalized, I’ve been thrown in with an unfamiliar psychiatrist who gives me a new diagnosis and a completely different set of medications. It took a lot of painful trial and error for my psychiatrist to come up with this diagnosis and treatment plan, and I’d really rather not have to go through it all over again every time I go in to the hospital.
(Maureen) You’ve been a very active member of the PatientsLikeMe community for a while now. What do you find helpful about using the site?
(Mountabora) I like being able to keep a centralized record of my mood and treatment history that I can use as a reference or share with treatment providers. Theoretically, this information gets transferred from provider to provider, but in reality, I know that a lot of things have fallen through the cracks over the years and my quality of care depends on me being able to give an accurate account of what’s happened so far. I wish I had started this when I was first diagnosed. Maybe I wouldn’t have been hospitalized so much.
(Maureen) Thank you for sharing your story and experiences with our PatientsLikeMe community, and with the mood conditions community at-large!
Today’s patient has a loud and strong voice. At PatientsLikeMe, we hear you. You’re saying, “I know this disease, I know how it acts in the real-world, and it’s time to share that with others.”
With thousands of patients sharing data and experiences every day on our site, we’ve decided to launch a report that takes what you, the patient, knows and shares it with you, the patient community at-large. For obvious reasons, we’re calling it The Patient Voice.
The Patient Voice is a collection of wisdom, sentiments and experiences shared by patients like you regarding important issues you face today. The reports include PatientsLikeMe member tips, suggested checklists and questions to ask yourself, and real-world patient experiences, as well as some fun facts from about the PatientsLikeMe community.
The first report is from our Mood Conditions Community, representing patients with depression, anxiety, bipolar, OCD and PTSD, on the topic of inpatient therapy (or hospitalization). It’s a topic that comes up quite a bit in our forum, and patients are openly sharing their positive (and negative) experiences with one another. We’re now sharing some of the positive experiences with you. Take a look at the free report and let us know what you think. Share it with your friends and loved ones who might find it useful. And, please, join the conversation on PatientsLikeMe today. You have a voice, so let’s hear it!
Posted by Lori Piscatelli Scanlon | March 27, 2009
In a recent blog post by New York Times’ Tara Parker-Pope, PsychCentral highlights “The 12 Most Annoying Habits of Therapists.” Launched a year ago this week, our very own Mood community has more than 1,300 patients using “Individual Therapy” as a treatment for their condition. We asked them to tell us some of the habits they find most annoying and elaborate on the ones outlined by Parker-Pope. Here’s what they had to say about some of those respect issues:
I had a [therapist] fall asleep during the session! I walked out (without paying of course).
My biggest peeve is with therapists who refuse to work in conjunction with my psychiatrist and his diagnosis.
I hate it when therapists talk down to me. I’m crazy, not stupid!
[Therapists:] Don’t look at patients as if they’re wacky or as if they’ve just said something wacky. We are always reading faces and reactions, the last person we need to be judged by is our therapist. Be mindful of how “tuned in” we are to your body language.
I love my current therapist, but…he once took a call in the middle of a session, obviously from a friend or family member (nothing critical), it had to do with whether or not they should order pizza…I don’t know if he was trying to get me to react or what, but with low self-esteem already, his disregard for my time and his placing more importance on ordering a pizza than on helping me really made me angry and hurt.
I spent 30+ years in the business world, so things like consistent lateness, taking private phone calls on my time, clock watching and snacking while in session are all things one would never do when with a business client. Perhaps therapists should take a few business courses.
On the flip side, many of our members (those with depression, anxiety, bipolar, OCD, PTSD) had some positive things to share about their therapy experiences. Here are a few of those comments:
My doctor’s advice: ‘don’t let go of the things you enjoy doing.’ I decided to fight for those things–reading, creativity, enjoying the outdoors, animals, writing with fountain pens, hats, etc.–because they’re part of what makes me ‘me.’ I think it was great advice and should be passed on to other people.
[My therapist] is flexible about what kind of therapy works for me from week to week. She has a lot of resources to recommend, and when one isn’t my thing, we try another. This goes along with flexibility, but it also shows that she knows her stuff. She has helped me find everything from relaxation tapes to yoga classes to PTSD workbooks.
My therapist won’t let me get away with anything. I think this is a very good trait in a therapist. She also believes I know my own body better than anyone else.
She is never shy about throwing me a compliment. In fact she has told me several times that she admires certain qualities about myself.
Got some experiences to share? We’d love to hear ‘em! Leave a comment below.
Posted by Lori Piscatelli Scanlon | March 23, 2009
A year ago today, PatientsLikeMe launched our combined Mood community for patients with depression, anxiety, bipolar, obesessive-compulsive disorder and post-traumatic stress disorder. It was first announced to the world in Thomas Goetz’s article, Practicing Patients, featured in New York Times Magazine.
Since then, more than 8,700 patients have joined the community, sharing detailed information about their symptoms, treatments and overall progress to learn more about themselves and others. Besides specific drug therapies (like Clonazepam or Lamotrigine), did you know many patients cite Listening to Music and Journal Writing as top treatments as well? Check out what they have to say.
Do you have problems concentrating? That’s the number one symptom reported by our members. Other top symptoms include muscle tension, headaches, back pain and stomach pain.
In the coming weeks, we will continue to share some interesting tidbits about the community, including some powerful personal stories straight from our members. Stay tuned!
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.
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our members also participated on PatientsLikeMe teams in walk/run efforts to raise awareness and money in the name of their disease. Congrats to the 40+ teams walking at events to support non-profit organizations like ALS Association, National MS Society, NAMI, Parkinson’s Alliance, APDA, and the MS Society of Canada. The real-time sharing and learning happening on PatientsLikeMe was also highlighted in the report series called 
AGM in Athens
Innovation: As a leader in Health 2.0, PatientsLikeMe executives are often asked to speak at various industry events. Check out 
