Thirty participants from around the world will work in small teams to develop “relevant and realistic research project proposals.” While the chosen participants come from a variety of professional backgrounds, they all share a common interest in advancing Parkinson’s disease (PD) research. The ultimate goal is to get participants thinking outside the box to create future projects that can “make an impact on the lives of PD patients.”
Just like PatientsLikeMe, the summer school knows that to advance research we have to connect with people who aren’t just studying disease, but living with it. Sara Riggare, a PhD student in Sweden with early onset PD, and Jill Ames-Carson, a physiotherapist from Canada living with PD, will both be at the summer school. Their participation and contribution will help lift patient centered thinking about PD to the next level.
“This year we celebrate the 5th edition of the summer school. We are pushing the boundaries by intensifying our engagement with Parkinson’s patients in our learning and evaluation process.” –Paul de Roos, MD
Some of the experts that will be guiding the participants through their work were selected by the Movement Disorder Society. The summer school is also teaming up with The World Parkinson’s Congress so that participants can showcase their research ideas directly to Parkinson’s professionals.
Last week we kicked off a new blog series featuring patient bloggers, and today, we’re pleased to present our second installment. Please meet Steve Ploussard, a longtime PatientsLikeMe member who writes a blog about living with Parkinson’s disease (PD) called “Attitude & Fitness Wins.” Steve decided that blogging was the perfect way to “come out” about his Parkinson’s diagnosis and become more at ease with it. Check out our interview with Steve below to learn how he developed his “fighting spirit,” what he’s doing to raise PD awareness and who inspires him the most.
1. What’s it been like “going public” about Parkinson’s on your blog?
Going public (“My Coming-Out Party”) on my blog has been a very emotional experience for me. When I clicked “Publish” after writing the post, I felt as if the weight of the world was off my shoulders. I became relaxed when talking about having PD with my family and friends just knowing they had read my blog and finally knew I had the disease. I believe one of the reasons my tremors have become less frequent and not as pronounced is that I’m more comfortable with whom I am, a 55- year-old man with Parkinson’s.
I had basically been trying to hide that I had PD for seven years. Just try keeping a secret (of the magnitude of having Parkinson’s) for seven years. It wears on you and can consume you if you let it. Going public has also allowed me to create awareness of what Parkinson’s disease really does to a human being and their family. The perception most have is that the disease is life-threatening and some have similar thoughts as if I had cancer and was going to die from it. I use the opportunity to educate that PD does not kill you. It only makes it more difficult to live a normal life due to the symptoms.
The PDRS is the only tool I am aware of that a patient can actually use to track the progression of PD. I have taken the test (a series of multiple choice questions about everyday activity) at least once a quarter for the past four years, and it has helped me immensely, especially from an emotional standpoint. When I first took the test back in November 2007, my score between 0 to 100 (100 being the worst or the furthest along with Parkinson’s) was 7. Just before I started to answer this question today, I took the test and scored an 11. My high was a 22 back in May 2011.
Obviously, I have a very slow progression of the disease. That gives me confidence I can live a normal life for years to come. The PDRS may not be an exact science, but it does give us a baseline in measuring PD. Your score can be used in determining what your next step is in fighting the disease and/or increasing or decreasing your medication(s). Over the years, every time I meet someone with Parkinson’s, I ask if they are aware of PatientsLikeMe. If not, I direct them to the website and explain about the benefits of the site, emphasizing the use of the PDRS.
3. What’s some of the best advice you’ve gotten from other PatientsLikeMe members?
The information and history on the PatientsLikeMe website of approximately 6,000 members [with PD] is phenomenal. The wealth of knowledge you have at your fingertips is extremely powerful. If you have PD and are not member, you are simply missing out. Neurologists specializing in Parkinson’s, in my humble opinion, should have PatientsLikeMe and the forum as required reading in their daily practice.
The following is one example of an experience I had recently with PatientsLikeMe. At 3:00 a.m. one morning, not able to sleep, I went online to the PatientsLikeMe website. The following is an outtake I posted on the [Parkinson’s] forum within PatientsLikeMe:
“Over the past 2 years I have tried to go on Carbidopa/Levodopa 3 times, the 3rd time being this past week, in hopes it would help control my increasing tremors. And now for the 3rd time I am stopping due to the side effects. For the 3rd night in a row I could not sleep due to the constant high anxiety/buzzing feeling along with uncontrollable gyrations of my head and arms.”
Within 24 hours, four members responded with their advice, which was basically to start with a lower dosage and increase very slowly, but to give the drug a chance. J. Marley, Lexiegirl,Parkinson’s Pete and equus, thank you from the bottom of my heart. I made the dosage change and gave the drug a chance and now Carbidopa-Levodopa [brand name Sinemet] is my friend.
4. You talk a lot about your fighting spirit on your blog. Where do you draw inspiration and strength?
Good question. My #1 inspiration in fighting the disease is having the right attitude and conviction to win the battles and the war against PD. This is why I am so obsessed with proper fitness and working out every day. I made the commitment back in September 2009 that, at the very minimum, I would go to the gym six days a week and do 60 minutes of cardio, 30 minutes of weights and 15 minutes of abdominal work. I am currently in the best shape of my life, which is an extreme confidence booster that I can win the war and hold off this disease until we find a cure.
Outside my family, there are three men that I draw inspiration and strength from almost daily. They are Coach Jim Valvano (“Jimmy V”), Michael J. Fox and Mohammed Ali. This past week was the anniversary of Jimmy V’s memorable speech at the ESPY awards on ESPN, when he was still alive fighting cancer. I have heard and played the speech so many times I can almost recite it by heart. The main strength I draw on is what Coach Valvano asked us all to try and do each day. We need to be deep in thought about something important to us every day. Each day we need to laugh and enjoy life. And lastly, each day we need to have emotions that move us to tears. If we can have deep thought, laughter and cry in the same day, that’s a BIG DAY. The tagline of the V Foundation, “Don’t Give Up, Don’t Ever Give Up” is the mission statement on my blog (www.AttitudeFitnessWins.com).
As we go through life, we all have our heroes we look up to for inspiration. For me that has changed as I have gotten older and hopefully wiser. When I was young, my heroes were sports stars like Mickey Mantle, Pete Maravich and Jack Nicklaus. In my adult life family members have become my heroes and support as I fight PD and try and live a normal life. My Dad, my Mom, my Uncle Jack, to name a few, have always inspired me to be the best I can be.
Since being diagnosed with Parkinson’s, my motivation to make an impact and help others living with PD comes from Michael J. Fox and Mohammed Ali, both of which have had Parkinson’s for many years. Michael J. Fox is an incurable optimist that I have respected since reading his book, “Always Looking Up.” His quest through his foundation in finding a cure for the disease in his lifetime is unsurpassed and is my Holy Grail. And then there is The Greatest, Mohammed Ali. My blog’s mantra, “Attitude & Fitness Wins,” says it all. I draw strength and a confident attitude every time I see it. His jubilation and his commitment to fitness and being a winner are attributes I want to portray in my life and hopefully pass on to others and have an impact on their lives as well.
Patients like you with life-changing conditions have to make choices every day, just like anyone else.These choices, however, typically have more at stake than how to RSVP to a party or even whether to walk away from an “underwater” home.For patients like you, your lives may be at stake.
I have watched my mother deal with three different types of cancers for more than 25 years, and the choices she had to make for me and my siblings to be successful were stark.As a single mother with a doctorate and two master’s degrees, she had to take jobs that paid less because cancer limited her energy.She took on enormous debt because she wouldn’t let her illness stop her from giving her children a private school education.Those choices started from physical and emotional hardship, then led to economic hardship.
Patients like you – and like my mother – have conditions you didn’t ask for, and your ability to keep a job and maintain economic stability isn’t just based on your talent or training, but also in your management of your conditions.Brought on by infection, age, genetic pre-disposition or unknown causes, these conditions factor into every choice, every decision—and in my mother’s case, which job to seek.We all make choices each day, but patients like you often have to choose between living well and just living.
One of the most important choices for patients like you is how to treat your disease.With your health care team, you try to make the best choice with the given information.The problem is information is scarce, untrustworthy or impersonal.That’s right, impersonal.What is a miracle treatment for one person could land another in the hospital. At PatientsLikeMe, we try to shine light on the information that can help each of you reach your best outcome.This is why we don’t just provide aggregate information, but allow you to access the profile of a person who is taking a medication to see if that person is “like you.”
The figure below speaks to the choices patients like you have to make about your treatments in a world with imperfect information.The chart depicts thousands of patient evaluations of efficacy and tolerability among major therapies across our 22 represented conditions.What jumps out immediately?That treatments for HIV and Parkinson’s are both more effective and easily tolerated than others out there for other diseases.Hundreds of millions of dollars have been devoted to research in those areas, and it’s paid off.Many believe Parkinson’s has a cure in sight, and HIV has, in less than 30 years, become a manageable chronic condition rather than a death sentence.
But what if you have other conditions?You are clearly making a choice between efficacy of the medications and the side effects that come with them.While aggregated data is great for directional insight, PatientsLikeMe is designed to let you drill down deeper.You can ask each person taking the treatment how it works for him or her.Why?Like everyone, you trust people like yourself who are going through or have gone through the same experiences.Only patients with similar situations can give you specific insight into what tradeoffs need to be considered when potentially trying a new medication.How will it affect my sleep?Is there daytime fatigue or “down time”?Can I operate heavy machinery?Will this treatment impair my ability to work in my profession?
These are the questions many of you are asking.These are the choices you make every day.My mother made her choices and has lived to see the fruits of her sacrifice.If we at PatientsLikeMe are going to help each of you answer the question, “Given my status, what is the best outcome I can hope to achieve, and how do I get there?”, then we have to continue to show the benefits of openly sharing information with each other.We have to excel at illuminating the real-world efficacy and risks of all kinds of treatments, and we have to help you connect with patients like you in a way that you get personal answers to your questions.
The more data you choose to share, the more we can all make the world of treatment information less imperfect and more personal.Simply stated, we’re all in this together.
We’ve got more of the patient voice taking us into the weekend. Today we have an interview with AlwaysLearning, a 3-star member of our Parkinson’s Disease Community. We caught up with AlwaysLearning at the 2010 Parkinson’s Disease Unity Walk last spring. She shared with us how she learned about her diagnosis and some of the changes she has made in her life to help her manage her Parkinson’s. Although she’s “always learning,” this member also always jumps at the opportunity to share. Enjoy the video and have a great weekend!
In addition to hearing from you through our PatientsLikeMe newsletters, we sometimes get a chance to meet you in person to hear what you have to say about living with your condition. Here are two videos highlighting interviews we conducted in 2010 with patients just like you. In the first video, you’ll hear directly from members of our Parkinson’s Community, representing Team PatientsLikeMe at the 2010 Parkinson’s Unity Walk. The second video is from the U.S. Transplant Games, where we interviewed YellowisJoy, a member of our Transplant Community and National Kidney Foundation’s Team Mid New England. Listen up – here comes the patient voice!
Subscribe to our YouTube page to receive updates about new PatientsLikeMe videos.
As you know, we like to just check in with our members to see how you’re doing as a person, not just a patient. This week on the blog, we’re highlighting some interviews to help you get to know some of the people here just like you. Here’s an interview with member “angela_b,” a member of our PatientsLikeMe Parkinson’s Community who was interviewed for one of newsletters last year. Read on to learn more about what puts a spring in her step, how she copes with her Parkinson’s, and what’s she’s learning from other patients. Enjoy!
* * *
(Amy) What puts a spring in your step?
(angela_b)
That would have to be my new love for crafting. I didn’t realize how many ideas I had hiding away in my head until just recently. Now, you cannot even mention a shower or party, and I’ll start planning what favors to give.
(Amy)How do you like to spend holiday weekends?
(angela_b)
I am a hostess by nature – that I get from my momma – so I love to have picnics/parties at the house. Plus it’s easier for me to give the party than to go to one. I have four kids, ages 11, 8, 3, and 1, so you never know what the moods will be!
(Amy) What is helping you to cope with your condition?
(angela_b)
I have a humongous support system. My family, friends. It’s pretty awesome. Plus, my husband and I just started our own non-profit (Running for Parkinson’s) to raise money and help fund Parkinson’s related issues within our community. We run (he runs, I try very hard to…LOL) and this helps keep me motivated!
(Amy) What have you learned recently at PatientsLikeMe?
(angela_b)
I’ve learned a lot from lurking. I’ve found many answers, like my cramping when I run is dystonia, and a lot of people have the same sleep issues. I’ve found that we all have a lot of “non-parky” things in common, such as career choices, crafting, running.
We are all in this fight together. It’s great to know that I am not alone in this, but surrounded by great, loving, caring people.
The research team is very proud of how our team has grown in 2010 and the impact we’ve made in the academic community. In 2010 alone, PatientsLikeMe and our work were mentioned in scientific literature more than 133 times. All of this is because of what you share with us.
Yesterday, we highlighted some of the research work we’ve done in 2010 across our four newest communities. Today, we’ll highlight our older communities. Below is also a highlights reel of some of this work.
HIV
Throughout 2010, we discussed the goal and benefits to measuring your quality of life (QoL). This concept of measuring QoL started in our HIV Community at the end of 2009. Earlier this year in a blog and podcast, Researcher Michael Massagli Ph.D. discussed some of the insights that are being shared by HIV patients through the QoL survey. For instance, we found thatthe average physical, mental and social well-being score of patients with a CD4 count below 200 is significantly lower than for those of you with a count above 200.
Parkinson’s Disease
The Parkinson’s Community has always excelled in reporting their health status through the Parkinson’s Disease Rating Scale (or PDRS). When answering the questions on this scale, members often asked us: “Should I respond when my drugs are working and I’m at my best (‘On’) or when my drugs aren’t working and I’m at my worst (‘Off’)?” Back in October, we released a brand new feature in the PD community that allows you to rate your symptoms as either “On,” “Off”, or in both conditions so now you can see the effect of your medications for yourself.
Multiple Sclerosis
We hear a lot from you about the difficulty of adhering to medication. Early last year, our research team developed a new rating scale for patients with MS to assess the difficulties of sticking to their medication. We presented findings at the Consortium of Multiple Sclerosis Centers (CMSC), the main North American conference for MS specialist physicians, nurses, and researchers. The team is currently working on publishing these findings.
ALS
Co-founder Jamie Heywood discussed our research into lithium in ALS at the TEDMED conference late in 2009. In early 2010, TEDMED released the video of his presentation where he shares our vision of the future of medicine. The team is currently working on publishing the lithium findings.
PatientsLikeMe, in collaboration with researchers at Oxford University, discovered that when ALS patients get symptoms in their arms first, they’re most likely to get it in their dominant hand. This research was presented at the ALS MND Symposium and cited on this MND Research blog.
We also collaborated with the Northeast ALS Consortium (NEALS) to examine the decision-making process that patients with ALS go through when considering whether or not to take part in research studies; this was published in the peer-reviewed journal Amyotrophic Lateral Sclerosis.
Here’s a short video highlighting much of the research you’ve helped us do in 2010.
Finally, I want to recognize how our team has expanded this year to better focus on what matters to you most. Some new additions include:
Brant Chee, Ph.D. – a specialist in natural language processing and detecting drug safety data in patient reported text
Kate Slawsky, MPH – an outcomes researcher helping to develop custom surveys for our partners and our platform
Shivani Bhargava – a research assistant supporting the team in ensuring our platform holds high-quality data about our patients
Thank you all for having a voice in research. There’s so much being learned from what you are sharing every day, and we are excited about what 2011 will bring.
Posted by Lori Piscatelli Scanlon | December 27, 2010
Last week, we posted highlights from our December community newsletter interviews. As we close out 2010, we want to spotlight another question asked this month – one that is relative to all members, all patients (no matter the condition). What obstacles have you faced and overcome this year?
First of all, I became well enough to leave my local psychiatric hospital after having been an inpatient for six months. My anxiety means that all new things – even getting on a bus to go somewhere new – make me have severe panic symptoms.
I now make sure I am out of bed by 0700hrs during the week and make myself go out at least three times per week, whether it is meeting friends for coffee or attending appointments. Otherwise I will return to “avoidance,” whereby I cut off all contact with friends and family, including calls and text messages.
I have had to deal with and overcome the struggles that come with tardive dyskinesia. Reglan has been black-boxed [with a FDA-mandated warning about the risk of tardive dyskinesia] over the past two years, but I took it for three or four years before that. [Read kidneygirl1198and0505's Reglan treatment evaluation for more details.]
Signs of tardive dyskinesia may include: continuous and repetitive movements of the mouth, tongue, and jaw; facial grimacing; lip smacking, puffing of the cheeks; uncontrollable movements of the arms, legs, fingers, and toes; and swaying motions of the trunk or hips.
Mine has gotten so bad that I have regular grand mal seizures from time to time, and sometimes it’s hard to carry on a conversation without looking weird.
One of the biggest obstacles in my life this year was getting over the death of a very close friend. This person became ill and died within a few months. Her death made me more aware of how precious life is.
Another obstacle was in the adjustment of my medicine for Parkinson’s. My doctor wanted me to try a new medicine with fewer long-term side effects. I tried it for several months but did not do very well. I am currently back on my original medicine, taking a little more than before, but I have readjusted well.
This year I overcame a hard breakup. It was difficult because I thought we were going to be together for a longer term relationship than we were (only nine months).
It was also difficult to start dating again. I forgot how many people don’t know much about how HIV is contracted and that there are many people who would never date someone who is living with HIV or will date someone living with HIV but the fear of contracting HIV puts too much of a damper on the relationship. It’s a difficult process.
I’ve spent a lot of time this year getting used to the fact that I have become dependent on others.
Prior to diagnosis, I sat on the local council, was involved in the organization of all types of public elections and I was a trade union official. These were voluntary roles which involved helping others. Yet, initially, after diagnosis, I had an enormous difficulty accepting help from others. However, I’ve come to realize that I have a loving family, fantastic friends and very supportive colleagues. I have found that many of them don’t know what to do and are very glad when I am specific as to what they can do for me.
I’ve also learned that no question is too personal. I struggled a lot with questions about personal hygiene and when I found the courage to ask these most intimate questions, I found that the professionals were so familiar with the questions asked that, beyond the initial embarrassment, we quickly went on to find solutions. I have also found that when people ask questions about my condition, they are entitled to an answer, an honest answer.
Oh my, 2010 has been a huge year! I didn’t know how I was going to get through it whole, but here I am knocking on 2011, one step at a time. I had to rejoin the workforce on a part-time basis this year, after years of not working (not being able to work), but I had to as my husband had lost his job about 18 months previously, and we were facing bankruptcy!
So I’ve been working part-time since last February, about 17 to 32 hours a week. We did go through bankruptcy, lost our home, vehicles and our high 700′s credit score with it. But you know what, I survived. Actually, no, I overcame, with the help of a very supportive Sunday School class, great friends, and a wonderful husband and daughter.
I work for the US Forest Service and, as of July, made it to retirement age still working. Two times they tried to force me to take a disability retirement. To keep working I have had to move around to several jobs in four different states because of my health. Not only have I made it to retirement age, but I am still working even though they are trying to get rid of me once again. (What a joke when you consider that the federal government has a quota for disabled employees).
It has meant I have not only had to work in a variety of locations, but doing different kinds of work. Just in the time on this forest I have worked as the Oracle DBA in the computer shop, in GIS, later in Forest Planning, with a crew of five Soil Scientists, a Botanist and myself mapping the soils and ecological types and writing recommendations for management. And now for the last two years I have been “unfunded” and doing all kinds of random jobs for projects in the office. Just this year that has included supporting the USFS in legal challenges as well as jobs so simple as filing paperwork and addressing envelopes.
For me, with multiple sclerosis and ADHD, my main problems have been the concentration to do what I need and want to do and fighting the progression of MS. I have RRMS [relapsing remitting MS] but since I have had it for 25 years, ever so slowly, it is progressing at the same time I get exacerbations. I have a new neurologist too, and he is part of a big group and getting through when I am having problems, is a problem.
Plus, with only SSDI [social security disability insurance] and not being able to find a part-time job, I have had to stop taking some needed meds and not going to necessary doctor’s appointments (e.g. my eye surgeon/doctor to see if the optic nerve is still swollen and I can’t do a necessary MRI because the insurance company won’t pay.) So to get help for my asthma, I am doing a research study to get free care. I haven’t found one for MS or depression yet.
Posted by Lori Piscatelli Scanlon | December 22, 2010
In December community newsletters (launched earlier this week), we asked some of our members to think about what they’ve shared and compared in 2010. Below are highlighted answers from each interviewee across all nine community newsletters. Thank you for your contributions.
We also want to thank all of you who have contributed to the 90 newsletters we ran this year, including the newly launched ones in our Epilepsy and Transplants communities. Finally, a special thanks goes out to our newsletter writer, Amy Morton, for pulling these together every month.
PatientsLikeMe has provided me with new friends-people who are experiencing the same problems as I am. I’ve learned that there isn’t a single question that won’t get a vast myriad of answers from the community. I’ve learned that we’re all very different people, and I’ve learned we don’t always agree. I’ve learned that we all care enormously for each other and are very eager to help those who find themselves in the same boat as we are. But most of all I’ve learned that I am not on my own. I’m not the only one facing a bleak future and not the only one who is able to appreciate what he has at the moment.
I really like it here in that I can keep track of all my meds with their side effects, etc. Plus I like it that I can list symptoms and have a history of all of it to review and learn from and share with my doctors. I hope that my input on meds, therapies, etc., helps other people. It is good not to be alone.
It has given me the experience of reading about others who are in situations similar to mine. It has shown me that I am not alone. I love reading the newsletters and the comments from other readers. It also helps to keep me up-to-date on any new suggestions or treatments.
Also, I became acquainted with someone online through PatientsLikeMe. We actually live in the same town, both work in the field of Education and have had Parkinson’s for the same length of time. Getting together with her was a pleasure, and she introduced me to the idea of meeting with a support group, which I had never done before.
It is invaluable. I find the Symptoms and Treatments areas so helpful. I have learned (from genuine people who are taking these meds) that some of my “quirky” side effects and sufferings from the meds I take can and do happen to others and are not imaginary. (My general practitioner and Consultant just brush the list aside and shrug their shoulders).
I have learned that I am not alone with my illnesses, which is good to know, and I have also learned that there is “light at the end of the tunnel.” I try to keep my profile as up to date as possible in the hope that it will be helpful to at least one or two members. I rate my Daily Mood [now called InstantMe] at least five days per week and always complete my Mood Map, again for the same reasons.
Well done PatientsLikeMe and its members. Keep going, you are doing really good work and long may it continue.
I love organization and having PatientsLikeMe help me to organize all of my medical information. I would like to have an ability to log simple notes on the PatientsLikeMe profile so every time I go to my doctor I can make some general notes (if needed) for that visit on my experience and what was covered with my provider.
(Note that all users can now use InstantMe to add notes/annotations to your Doctor Visit Sheet)
PatientsLikeMe has been such an encouragement to me, not only in what others have given to me through sharing their stories, but also by opening up a window for me to be an encourager also. I love the newsletters that are super reminders of how to not get off track, and also how to be good to myself.
I think I have been pretty good at sharing, but this has been one new method, especially with some of the health issues with others facing similar situations. In the past I have answered questions for people who had their first seizure or just questions, but with this site, I am able to communicate with others who have had the same operations, take the same medications, etc., and really understand things better (from a different perspective).
PatientsLikeMe has helped me so incredibly much! I’ve made so many friends that I thank God for every day. It’s just like, no matter what you have or haven’t had transplanted, whichever organ you need or have, everyone on here understands you and what you’re going through.
I just really hope that people can say that about me. It took me awhile, but no one is alone out there. Everyone is going through their own personal struggles. I just want everyone to know I am all ears!
“I’ve had Parkinson’s for 15 years, and I feel like I can help people more by being vocal than I can by being quiet.” -Aunti J
Stand up and shout! Episode four of our new podcast series, “The Patient Voice,” is here! For our next interviewee, meet Aunti J. Like many others who contributed to the quilt, Aunti J wasfeatured in her local newspaper. She was proud to be raising awareness of Parkinson’s disease (PD) on behalf of all those represented through their patches on the PatientsLikeMe PD community quilt.
Aunti J inherited her PD and has been living with it for most of her adult life. While she has plenty of first-hand experiences with PD, she has also been a caregiver for someone with the disease – her father. A wealth of knowledge with a big heart, Aunti J makes it a point to share as much as she can about what she has learned. When her father passed away, she came online looking for support and an opportunity to share with others. The PatientsLikeMe PD community is thrilled that she found us!
With more than 200 patients with inherited PD on PatientsLikeMe, Aunti J was able to find patients just like her. In fact, she tells a compelling story about how she also found others who were experiencing compulsive disorder as a side effect of their PD and describes feeling as if a weight had been lifted off of her shoulders.
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 | October 30, 2009
PatientsLikeMe made the following announcement last night at the TEDMED conference. For more on Jamie Heywood’s presentation, check out what people are saying on Twitter.
- – - – - – -
PATIENTSLIKEME ADDS ONLINE COMMUNITY FOR PEOPLE WITH CHRONIC FATIGUE SYNDROME
Researchers Use Open Medical Network to Measure Real-World Impact of XMRV Virus
Cambridge, MA–October 30, 2009–PatientsLikeMe (www.patientslikeme.com), the leading online community for people with life-changing conditions, announces the expansion of its fibromyalgia community to welcome patients with chronic fatigue syndrome (CFS), also know as myalgic encephalomyelitis (ME). By sharing information about their experience with CFS, patients can now find others just like them, including other patients who may have the newly discovered xenotropic murine leukemia virus-related virus (XMRV). The purpose of this expansion is for PatientsLikeMe to research the impact XMRV has on CFS patients.
“With 1 million patients diagnosed with CFS, and potentially 10 million Americans who could be infected with the XMRV virus, there is an unique opportunity to use the power of our open medical network to understand this illness and accelerate the validation and development of new biomarkers and treatments,” says Jamie Heywood, co-founder and chairman of PatientsLikeMe.
There are currently more than 7,000 patients, many who have CFS, in the PatientsLikeMe fibromyalgia community sharing meaningful data for researchers to analyze about the condition. As part of this expansion, the PatientsLikeMe platform will allow patients who test positive for XMRV to indicate that on their profiles, much how ALS and Parkinson’s patients can now add their genetic information.
Adds David S. Williams III, head of business development at PatientsLikeMe, “This discovery may spur research into the efficacy of anti-retrovirals for patients with CFS, which could have a dramatic impact on the $10 billion market for these medications.”
Heywood will announce the new CFS community on stage at the health technology conference TEDMED in San Diego, CA today. CFS marks the 17th condition available to patients on PatientsLikeMe, which now boasts more than 45,000 patients sharing health data on treatments, symptoms and outcomes. The company’s next community for people with epilepsy is scheduled to launch in early 2010. More about PatientsLikeMe partnerships can be found on its partner site: http://partners.patientslikeme.com.
When most people think of Parkinson’s disease (PD), they think of a shuffling gait, a shaky hand, and slowness of movement. As awareness has increased of the non-movement symptoms of PD, such as hallucinations and depression, we’ve seen the psychological consequences the disease can have too. More recently, studies in the scientific literature have been reporting on cases of excessive gambling in patients with PD, sometimes associated with the use of dopamine-agonist drugs such as pramipexole (brand name: Mirapex).
“I am spending a lot of money that i should not spend. I wake up thinking about the lottery, I daily purchase lottery tickets, scratch offs, and often wish that I could get on the bus to go to the casinos… Help me before I spend all of our little savings.”
We set out to investigate further, setting up a research collaboration with Dr. Graeme MacPhee of the Parkinsons Disease Non-Motor Group (PDNMG) and Southern General Hospital (Glasgow, Scotland), who has carried out studies in this area in the past. Although previous studies had associated problem gambling with dopamine-agonist drugs, we wanted to find out if gambling might be elevated in other patients with a neurodegenerative movement disorder; maybe gambling was just an outlet for boredom or something that someone with physical disabilities could take pleasure in as a hobby. Therefore, we used a control group from our ALS community. Because users of our site are, by definition, web users, we were also interested to see if our users were more likely to be using online gambling websites than other reports in the literature. Finally, we wanted to know more about what was driving patients’ gambling behavior.
Because of the size and levels of engagement in our patient communities, we were able to receive responses from more than 400 patients in about a week. Normally, a study of this size would take several years and a team of researchers to carry out, showing the potential power of sharing and openness.
What did we find?
We found a higher level of problem gambling in our PD population (as defined by the South Oaks Gambling Scale) than previous studies; 13% of PD patients as opposed to previous estimates of around 4%.
Patients with ALS were much less likely to gamble; only 3% of ALS patients scored above cutoff for having a gambling problem, compared to estimated rates of 0.25-1.7% in the general population.
The average “problem gambler” with PD had spent nearly $3,000 on gambling in the past 12 months, and an estimated $24,000 in their lifetime.
The most common forms of gambling behavior were the lottery, slot machines, or visiting a casino. Gambling online using the internet was uncommon; only 2% of PD patients reported ever having gambled online, and just 2 out of 27 problem gamblers with PD.
PD patient with problem gambling were more likely than ALS patients with problem gambling to say that their gambling was distressing or out of their control.
In our study, problem gamblers with PD were no more likely than non-gamblers to be on a dopamine-agonist drug.
We were interested to find that our study produced a higher estimate of problem gambling in PD than previous studies. It could be that our population is biased or unusual in some way; we have a slightly higher proportion of young-onset PD patients, who may be more prone to gambling. We also suspect that people are more willing to admit to distressing or embarrassing behavior issues in an anonymous online survey as opposed to discussing it in the doctor’s office.
As more of these cases have come to light, warnings about compulsive behavior have appeared on the label of dopamine-agonist drugs such as Mirapex. It is the responsibility of everyone involved in the care of people with PD to warn them of the risks. The more patients like those in our community share their real-world experiences of treatments and side effects, the more researchers, drug-makers, doctors, and other providers can learn to help minimize the risks and maximize their quality of life.
Did you know this April is both Parkinson’s Awareness Month and the 2-year anniversary of the PatientsLikeMe Parkinson’s community? We invite you to celebrate with us all month as we share real-world patient insights and experiences of living with this disease…and we ask you to share on!
The PatientsLikeMe Parkinson’s community has come a long way since it launched in April 2007 – topping more than 3,400 patient members in just 24 months. Our community members share so much about themselves on a daily basis – from details about how they manage their condition to their personal experiences and stories. Why share? Simply stated, to learn more about themselves while helping others better understand this condition. In the spirit of awareness and sharing, this month we’ll share with you some of what we’ve learned so far from these inspirational individuals and keep it real with some personal patient stories about living with PD.
Additionally, later this month, PatientsLikeMe is once again sponsoring the Parkinson’s Unity Walk (www.unitywalk.org), “the largest single-day fundraising event for the Parkinson’s community.” The event, which brings together thousands of people touched by Parkinson’s, takes place every spring in New York City’s Central Park. PatientsLikeMe members from all over the U.S. will once again be meeting in New York to walk together as a team. (Check out some of our onsite interviews with PatientsLikeMe members from the 2008 Unity Walk and keep an eye out for 2009 highlights).
Stay tuned for more from us as the month unfolds. Until then, what else is happening this year for PD Awareness Month? Share your events or PD news in the comments below!
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.
No Comments » 
Openness 
Permalink
Aunti J inherited her 
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 
