10 posts tagged “Multiple Sclerosis”

Patient Choices: The Deciding Factors

Posted March 2nd, 2011 by

screen-shot-2011-03-01-at-45607-pmIn a recent series on patient choices, we’ve highlighted a lot of the decisions patients like you have to make on a daily basis.  A few weeks ago, David S. Williams kicked off the series with a blog about the treatment and career decisions that patients like you, and his mother, have made.  Kate Brigham then highlighted examples of the social and emotional tradeoffs you make every day.  Last week, we published the results of a recent patient poll where more than 4,000 of you answered questions about the choices you’ve made to tell (or not tell) others about your diagnosis.  (See “Patient Choices: The Shape of Sharing” and “Patient Choices:  How Open Are You Now?“)

Today, we continue the series by highlighting examples of the choices patients like you have made in the past twelve months (pulled from 2010 newsletter interviews).


Patient Choices About…

Being Open

“I decided to make my profile public with the hope that something I have experienced, have done, or could say may help someone else along the way. Because my family seems to still live with the stigma of HIV/AIDS and prefer I don’t allow others close to our family to know of my status, I guess maybe in a way it is my subconscious defiance to my family’s fears.” – memyselfandHIV

Staying Active

“I imagine that by running the races I do, and talking to people about the benefits of a healthy and active lifestyle, that I might motivate a few people to become more active themselves. I mostly want people who like me have MS, but are still capable of being active, to know that it might help their symptoms and make them more comfortable.” – Ramilla

Making Lifestyle Changes

“I can’t drive under no means because where I live you need to be seizure-free for five 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.”  – Blueeyedgoddezz

Tackling Challenges

“My biggest challenge of late has been to deal with my newly diagnosed diabetes. I am fortunate, because it was discovered in the early stages, so I’m doing quite well controlling my glucose levels. I’m learning to accept that there will be some high readings, rather than stressing over them, since my doctor is very pleased with my progress.” – Dirty Butter

Retiring

An interview with AlwaysLearning on her choice to retire from teaching.


What choices have you made lately?

PatientsLikeMe member Emma


Drug Safety: It’s About More Than Just Compliance

Posted September 30th, 2010 by

pillsEngaging in social media presents a number of uncertainties to pharmaceutical companies. In a world where much of the medical dialog has moved online, these uncertainties have emerged due to absent or unclear guidelines from the Federal Drug Administration (FDA), privacy and regulatory concerns about engaging directly with patients, and the potential for significant consequences.

When I recently spoke before the FDA, we highlighted how our pharmaceutical partners are taking a leadership role by navigating through these issues. In so doing, our partners are learning about real world experiences of patients and how to meet their adverse event reporting responsibilities in the PatientsLikeMe Epilepsy, Organ Transplant and Multiple Sclerosis communities.

“…as the FDA contemplates the Internet and social media as an emerging source of drug safety data, it is essential to consider what characteristics distinguish a social media site as being capable of contributing to drug safety in a meaningful, computable and quantifiable manner.”

Meaningful, computable and quantifiable are three words that underscore all that we do at PatientsLikeMe. This includes the creation of our patient safety program. Early on, we approached patient safety proactively with a pilot program in our Multiple Sclerosis Community. Launched in 2009, this program allows patients to voluntarily report adverse events that funnel to the FDA’s MedWatch system. Our system automatically pulls relevant data from the patient’s existing profile into an FDA 3500 form, dramatically reducing form completion time.

Going beyond that in areas where we work deeply with our pharma clients, we developed an integrated and comprehensive drug safety reporting platform that monitors patient data and free-text for potential adverse events. This data is then medically curated into standard MedDRA terminology and submitted electronically to meet regulatory timelines and reporting criteria. Of note, PatientsLikeMe is the only online health data platform in social media that has passed multiple drug safety compliance audits.

The reality today is that patients are sharing their real-life experiences with post-marketed drugs online. By using structured data collection tools within the PatientsLikeMe platform overseen by a drug safety professional, industry partners can improve patient safety.

This is about more than just compliance, though. We believe it’s about leadership – patients and pharma working together in new ways. Listening – to understand the positive and negative patient experience – is the right step in developing a trusted relationship. And this trust-based relationship is the only foundation upon which to build your social media strategy.

PatientsLikeMe member jamie


Raising MS Awareness: Meet Ramilla…

Posted March 18th, 2010 by

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we interview members each month in our newsletter to find out more about how they approach life.  In honor of MS Awareness Month, we are pleased to share with you our recent interview with Ramilla, a three-star member of our MS community.  Here’s what Ramilla had to say…

2166 (Amy) What keeps you motivated?
79060 (Ramilla) I keep motivated by focusing on the progress that I still make every day. Even on the hard days, when I don’t feel so well, I manage to take something from it that I feel good about, and those hard days make me appreciate the good days so much more.

I am also motivated by the people I meet. I have met so many people over the years who have been affected by MS, and many more who don’t know anything about MS. I like that I can motivate the people I meet to be more active, both able bodied, and people with chronic conditions like MS.

I imagine that by running the races I do, and talking to people about the benefits of a healthy and active lifestyle, that I might motivate a few people to become more active themselves. I mostly want people who like me have MS, but are still capable of being active, to know that it might help their symptoms and make them more comfortable.

2166 (Amy) Who do you admire and why?
79060 I admire a lot of people who have touched my life since I was diagnosed. I found inspiration from Michael J. Fox, Montel Williams, and Mitch Albom with their books about the conditions they and their friends have faced.

The person who I admire the most these days, and who I think about every time I finish a race, and every time I feel like I don’t want to go for a run, is Jon (Blazeman) Blais. Jon was diagnosed with ALS in 2005, and in October that year, he ran the Ironman in Kona, Hawaii.
He rolled across the finish line with a determination that inspired me to try a triathlon myself and has inspired athletes of all levels to finish their races with a roll across the line in his memory. His parents are fierce advocates for ALS, and he is remembered every year at the Ironman World Championships. Here is a video about him on YouTube.

2166 (Amy) How has your condition affected your work life?
79060 (Ramilla) My work life is affected by my MS every day. I notice my energy levels change through out the day, and there are a lot of distractions. Sometimes I get confused and lose track of what I am doing. I plan my day to take advantage of when my mind is the clearest to be the most productive, to tackle the complicated projects that I work on day to day.

It has also affected how I plan for my career in the future. Not to sound morbid, but I think it would be silly of me to plan of having a long career with an active, physically demanding job. I am going back to school to upgrade some of my high school courses, and looking at going to college, and maybe university. I think it may be better to plan on a knowledge-based job rather than a physical one. My hope is that I can manage to maintain a career and be self sustainable for the long term.

2166 (Amy) What’s your favorite aspect of PatientsLikeMe?
79060 (Ramilla) I love that through PatientsLikeMe I can connect with so many more people who are fighting MS. Already I have been in contact with people who were active pre-diagnosis, and had not considered that they could still be active. The encouragement I get from the people I have met on the site has been a great help to my training.

While this site has really opened my eyes to many of the less inspiring aspects of MS, it has re-affirmed my belief that life goes on, and it is up to me to live it to the best of my ability. PatientsLikeMe gives me hope, and that is one of the most important things you can keep when you have a condition like this.

2166 (Amy) Thanks for sharing your story with us, Ramilla!

A Year in Review: PatientsLikeMe in 2009

Posted December 31st, 2009 by

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 img_8741-300x225our 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.

Many of our members have also become fans of PatientsLikeMe on Facebook.  Here are a few quotes posted to our Facebook page in ’09:

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.”

Research Updates
If you haven’t checked out our research page or subscribed to Google Scholar alerts (92 articles referred to us in 2009!), here’s what you’ve been missing…

This year our ever-growing research team continued their analysis of the real-world data being shared by patients like you.  Awarded the inaugural JMIR award at Medicine 2.0, the PatientsLikeMe research team published pieces on compulsive gambling in patients with Parkinson’s disease in Movement Disorders, expanding the gold standard rating scale in advanced ALS in European Journal of Neurology, and “The power of social networking in medicine” in the highly respected journal Nature Biotechnology.

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 berlin-lithium-poster-207x3001AGM 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:

  • The National SummitInnovation: 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.

Happy New Year!
– The PatientsLikeMe Team


Patients showcase PatientsLikeMe to their local support group

Posted January 18th, 2008 by

photo.jpg Our members are very enthusiastic about the value generated by sharing their information. So much so that recently two of our members decided to don their hard-earned PatientsLikeMe t-shirts and share their experiences using PatientsLikeMe with their local MS support group. They recruited several new members at the meeting and gave more information about PatientsLikeMe to everyone. Our members believe that the more information we share, the easier it will be for patients and doctors to see what’s working for others and for scientists to use the data to develop new treatments faster. This is a great example of patients helping other patients and we love seeing our members share, online and in real-life. Thanks!


The “We Have MS Together!” video

Posted January 16th, 2008 by

Learning from each other can be addictive, and even fun at times. One of our more prolific (and outspoken and creative) MS members, Keeping On, decided to celebrate her 1000th post with a musical salute to some of the most humorous posts and posters in our MS community. So she got together with another witty member, sacleveand, to produce and star the video “We Have MS Together!”


Community Report: The composition and experience of the Multiple Sclerosis community

Posted January 9th, 2008 by

Six months after its public launch, the MS PatientsLikeMe community includes over 1 in 200 MS patients in the U.S. and the rate of growth continues to escalate.

To mark the occasion and experiment with new community tools, we put together the first PatientsLikeMe community report. In this report, we begin to paint a portrait of the MS community, who is in it, and how the community compares with previous research on MS. This post features portions of the report.

In the descriptive section we discuss characteristics of the user base such as what types of MS users have. As you can see in the figure below, all types of MS are represented with 61% of users report having relapsing and remitting MS.

Distribution of MS types on PatientsLikeMe

The report also explores research questions that the size of our community now allows us to address. For example, we look at the many ways MS first manifests itself – the variety of initial symptoms. In the figure below, we chart how two different types of MS (relapsing-remitting and secondary progressive) first appeared. The most common first symptoms for both types were “sensory changes” and “optic neuritis.” But “Difficulties walking” was a more common first symptom for relapsing-remitting MS than for secondary progressive MS.

First symptom by MS type

If you have MS or are a caregiver to someone with MS, take a look at the report posted on PatientsLikeMe. Note: requires registration on the site.

Based on feedback, we will be integrating some of the elements into an new upcoming area on PatientsLikeMe. Stay tuned!

PatientsLikeMe member jfrost


PatientsLikeMe T-Shirts

Posted December 7th, 2007 by

As the holiday spirit finally came upon us we thought we should do something nice for our members. There are thousands of them (and many more every day), so it isn’t reasonable to thank every one (we may look like Santa Claus, but we’re not, sadly). So we decided to thank the “stars” of the community – our three star members- and send them a PatientsLikeMe package with a rare PatientsLikeMe T-shirt, and other goodies.

Here are some of our members showing off their new shirts….

jcamero t-shirt photo
This is one of our longer-time MS members, jhcamero, who has recorded 12 years of treatment and symptom information on the site. You have to love the “Christmas Story” lamp and stocking in the background.

kakaijade tshirt
This is Kakijade, who was diagnosed fairly recently, and has used the site to track her care since joining in August. Both of these members are frequent contributors to the site. Both are being treated with newer meds, and their sharing of their experience with these drugs is very helpful for other members.

PatientsLikeMe is about patients sharing their experiences and outcomes with each other so they can all better manage their disease and make the best possible decisions. These profile stars reflect how much sharing members are doing with one another. Three-star patients have provided detailed current and historical healthcare information about their condition. Having these complete profiles really helps others understand the history of the progression of the condition, and how it has been treated.

Everyone who had received their PatientsLikeMe package has been delighted, and we’re told they’re wearing them with pride, sharing their excitement for what the site means for them.

We look forward to sending out many more of these “thank you” packages to our three-star members.

As they say, “ho, ho, ho!”

Tim Horgan


PatientsLikeMe Update: November 2007

Posted November 29th, 2007 by

It’s been six months since we launched our first newsletter, and a lot has happened at PatientsLikeMe in that time. With the holiday season now upon us, we thought we should give thanks for the amazing strides made in all our communities. There is power in numbers, as they say, and we are grateful to every new member for increasing our ability to effect change.

ALS Community
We are proud to announce that our flagship ALS community has grown by nearly 50% in the last six months to 1,450 patients. We’re even prouder that it now attracts the equivalent of 10% of all newly diagnosed ALS patients in the US. To share what researchers can learn from this model for openness, our own Paul Wicks, PhD, will present a lecture on social medicine at the upcoming 18th Annual Symposium on ALS/MND, which we are co-sponsoring. Please stop by the PatientsLikeMe booth if you’ll be there!

MS and Parkinson’s Communities
Launched in late spring, our MS and Parkinson’s communities have also experienced staggering, if not meteoric, growth. We are delighted to report that our MS community recently hit a major milestone when it surpassed the 2,000-member mark(!) while our Parkinson’s community now has more than 800 members. We welcome and thank all of these new members. Please keep inviting others to join! This vast pool of shared data is what will help make PatientsLikeMe a juggernaut in MS and Parkinson’s research.

HIV Community
The PatientsLikeMe family continues to expand as our newest community, HIV, began accepting charter members last month. We expect to formally launch early next year, and we look forward to growing this fledgling community to its fullest potential. Please help us in this effort. If you know anyone affected by HIV, please invite him or her to join PatientsLikeMe today.

PatientsLikeMe member dwilliams


PatientsLikeMe Update: May 2007

Posted May 15th, 2007 by

This month is momentous because we’re celebrating a major milestone at PatientsLikeMe. We now have over 1,000 PALS in our community. Thank you for making PatientsLikeMe your home and spreading the word to other PALS. The more patients we have, the more we learn from each other.

We are also thrilled to announce the debut of two new communities for Parkinson’s disease and multiple sclerosis (MS). If you know people with either condition, invite them to join PatientsLikeMe. We want them to know what you’ve already learned – that when patients share their data, it empowers everyone.