It’s the most wonderful time of the year. Or is it?
The holidays can be a time of merriment and joy marked by festive parties and family reunions. But they can also be quite challenging.
Despite the great cheer advertised everywhere you look, some people find themselves struggling with stress, anxiety, loneliness and/or depression. This phenomenon is sometimes called the “holiday blues.” Add to that things like fatigue, insomnia and seasonal affective disorder (SAD) – which affect many PatientsLikeMe members on a regular basis – and you have the recipe for a perfect holiday storm.
Here’s a look at how our patients are attempting to cope with the stresses of the season:
“Seeing all the lights, the preparations, the shopping for the holidays makes me dread what is coming. I try to go to low-key places where there isn’t as much traffic and aren’t as many people. I try to play down the importance of everything so I don’t become so obsessed with choices and opinions. I take breaks. LOTS of breaks. I try to make sure I take them before I even become overwhelmed in the first place. And I try to find free things to replace some of the costs – either as presents or activities.” – Patient with major depressive disorder
“Having family meet on a major holiday is enough to upset the emotional applecart so to speak. Try just to do an average job of cooking, it doesn’t have to be perfect. Take a break when you can…get involved in objective projects: carefully following a recipe or cooking something with your mind fully on it can help calm panic attacks. If you are doing your best, that will be the best you can do.” – Patient with Parkinson’s
“It puts a lot of stress and pressure on me. I have three children who get a lil’ demanding, and then a husband who expects me to travel with three demanding children and then stay at relatives’ tiny houses, etc. The noise, the gossip, the fake hugs from relatives who really do not like me, it all honestly just ‘gets to me.’ But this year, I’m taking my power back by saying NO to the parts of the holidays in which I do not want to participate.” – Patient with bipolar I disorder
“Sometimes I get depressed because I’m usually one of those people who have to get assistance to give their children gifts for the holidays. I also get depressed because I don’t look the way I want to (I am overweight) and do not want people to see me like that. So the gatherings can be nerve wracking for me. [But] I am learning to let go of the ‘shoulds.’ Not easy, but it can be done. If I am really not feeling up to something (I get exhausted really easily), then I allow myself to not go, or not run the thing like I used to, or only bring one thing instead of 3 or 4. Pacing myself has been a good thing to learn.” – Patient with fibromyalgia
Are you feeling signs of the “holiday blues”? Are the demands on your time and your pocketbook starting to overwhelm you? Before you pack up the car or welcome any house guests, check out these great tips from the Mayo Clinic for getting through the holidays with as much joy as possible.
According to traditional Chinese medicine, living a demanding, hectic lifestyle deeply influences mood, mental function, cardiovascular function, the liver and tolerance to change. But practitioners believe there are herbal preparations that can help reverse these problems naturally – without side effects. One of the top remedies for stress management according to Chinese herbology is serenagen.
Used throughout China since the Yuan Dynasty (1279-1368 AD), this botanical formula was designed to instill a sense of inner calm and help maintain equilibrium between body systems. Serenagen may include some or all of the following Chinese herbal extracts: Rehmannia Root, Schisandra Fruit, Jujube Fruit, Dong Quai Root, Chinese Asparagus Root, Ophiopogon Root, Scropularia Root, Asian Gingseng Root, Chinese Salvia Root, Poria Fungus, Polygala Root and Platycodon Root.
At PatientsLikeMe, where more than 120,000 patients are sharing their experiences with complementary and alternative medicine (CAM) and other forms of treatment, two patients report using serenagen to relieve stress. Neither reports any side effects. Here’s how one of them reviews serenagen on her treatment evaluation:
“This is the only thing I have taken for anxiety and stress issues that takes the edge off. It is an internal calm without being drugged up or out of it.”
JOIN PATIENTSLIKEME TODAY
Have you also tried serenagen? Join PatientsLikeMe and add your experiences with serenagenside effects, effectiveness, cost and more to our growing body of knowledge. Then, stay to exchange advice, research treatments and learn from other patients like you.
With more than 82,000 patients on PatientsLikeMe, there’s a lot of information being shared with one another. Last month, we highlighted how your sharing affects the experience of many on our site (One For All series).
Today, we continue that theme by taking a look at information being shared across all of our communities that many of you may have in common. Can you guess how many of you are on similar treatments or experiencing similar symptoms even though you are in different communities? Read on to find out.
DID YOU KNOW…
Of the members who have reported their age, more than 8,000 of our of you have indicated you’re under 30-years old and more than 12,000 are 55-years old or older.
You report using more than 4,500 treatments for your conditions, including prescription drugs, supplements, over-the-counter medications, medical devices, life-style modifications, therapies, etc.
The most widely used prescription drugs reported across communities include Gabapentin (Neurontin), Glatiramer acetate (Copaxone) and Duloxetine (Cymbalta).
Some of most frequently “tagged” topics in the forum include research, symptoms (e.g., pain), SSDI (Social Security Disability Insurance), coping strategies and side effects.
A special thank you to all of our members for continuing to share your data and experiences to help others just like you.
Posted by Lori Piscatelli Scanlon | January 27, 2010
At PatientsLikeMe, we believe in getting to know the person, not just the patient. To celebrate the launch of the new epilepsy community this week, we sat down (virtually) with 3-star member, Blueyedgoddez. Here’s what she has to say about her experiences living with epilepsy:
(Blueyedgoddez) I have blue eyes and I sometimes feel like a goddess, as silly as that may sound. I don’t mean a goddess as in a rich snob or anything. I mean it like an earth child, that sort of thing.
(PatientsLikeMe) When were you diagnosed with epilepsy? What was that like?
(Blueyedgoddez) I had seizures since infancy, however i was officially diagnosed at the age of six. When I was a child, it was difficult in certain ways. Mostly because I knew I could never enjoy certain things that children enjoy – i.e., video games (at that time the resolution of the games were too high, the graphics would induce seizures), rollercoasters, the gravatron (at the carnival), any type of flashing party lights, among other things. As an adult, it’s not that much easier. I can’t drive under no means because where I live you need to be seizure-free for 5 years and I never am. So that’s a challenge having to depend on people or public transportation. Plus, where I work my co-workers aren’t as understanding as people were when I was a child. The people I work with tend to say I use my epilepsy not to do things. How could anyone say I use Epilepsy to my benefit? To me it’s very hurtful. It makes no sense. Also one other thing that seems to bother me as an adult is having children. I was told it’s going to be very difficult.
As you can see by now, it’s a journey having epilepsy. However, in the end, you learn to live, laugh and love – despite all your perils.
(PatientsLikeMe) How does epilepsy impact your every day quality of life?
(Blueyedgoddez) The disease in itself isn’t what really effects my day to day activities, however it’s more the side effects from the medication to treat my epilepsy. Everyday I’m bound with multiple side effects such as, fatigue, headaches, depression, anxiety, aches and pains, nausea, the list could go on. Some days I wake up fine, others not so fine. I have my good days and bad days.
(Blueyedgoddez) I joined because I didn’t want to feel alone anymore. Simply put. And I know that I could be helpful with my life experience of having epilepsy to someone else just like me, more or less. That’s why I’m here to be helped and to help others. I have a voice and I intend on using it.
(PatientsLikeMe) Thank you for using that voice and sharing your story and experiences with our community!
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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ALS, Chronic Fatigue Syndrome/ME, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mood Conditions, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Rare Diseases 
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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 
