17 posts from March, 2011

Lights, Camera, Action!

Posted March 30th, 2011 by

This year, we’ve finally found a few moments to get the team together and share our story as a company – and capture it all on video.  Below are some cool pictures of our video crew and PatientsLikeMe team setting up for a recent video shoot.  We hope to have the final video up soon, so stay tuned. Happy Wednesday!

videoshoot2

PatientsLikeMe member lscanlon PatientsLikeMe member afleishman


Who’s Trying a Lectin-Free Diet?

Posted March 27th, 2011 by

Are you on a lectin-free diet?  Trade notes on this dietary intervention at PatientsLikeMe, where more than 120,000 patients are sharing their experiences with treatments, supplements, lifestyle modifications and more.

But first, let’s talk about lectins, which are sugar-binding proteins that mimic insulin. Lectins bind to carbohydrates and various proteins, causing inflammation. As a result, they have been linked with autoimmune disorders such as IBS, Crohn’s disease and fibromyalgia.  To help fight this inflammatory process, a lectin-free diet restricts certain things like grains, nightshades (i.e. peppers, tomatoes, potatoes), legumes (i.e. beans) and some starches.  While most foods contain some amount of lectins, these food groups are considered the “worst offenders.”

What kinds of data points can you share about a lectin-free diet at PatientsLikeMe?  Thanks to our unique data-sharing platform, you can share detailed information on this diet’s effectiveness, side effects, cost and more.  You can also offer freeform tips and advice to others considering the diet and report what health condition(s) you are attempting to treat.   Whether you’ve found a lectin-free diet helpful in controlling inflammation or you’ve discontinued it for various reasons, your story will provide valuable insight to those who are searching for answers.

JOIN PATIENTSLIKEME TODAY

Have you tried a lectin-free dietJoin PatientsLikeMe and add your experiences to our growing body of knowledge.  Then, stay to exchange advice and support, research common treatments and learn from other patients like you.

Join PatientsLikeMe


PatientsLikeMeOnCall™: “A Look Ahead” at Patient and Industry Interaction (Episode 2)

Posted March 25th, 2011 by

“Social media is the canvas on which patients can really paint the entire picture of the experience they’re having with their disease and how it impacts their lives.” David Williams

David Williams, Chief Marketing Office and Head of Business Development

Why is it so important for patients and industry to work together?  Chief Marketing Officer and Head of Business Development David Williams tells us just that in this week’s installment of “A Look Ahead.”  We sat down to discuss the benefits of aligning patient and industry interests as well as the role that social media can play.

Among other win-win results, David shared that this alignment of interests can produce:

  • Faster development of treatments and services
  • Products that impact a patient’s quality of life, not just clinical outcomes
  • Greater patient influence and input on industry decisions

We also talked about how social media has become a key method of interaction, allowing pharmaceutical and other healthcare companies to better understand the functional impact of a disease on everything from mental productivity to the ability to stay employed.  Patients like you discuss issues like these online every day, and if the industry is paying attention, it can lead to richer data and improved services.

What successes has PatientsLikeMe had in bringing patients and industry together?  And what kind of possibilities do we see ahead?  Tune in to David’s full interview here:

Thanks for stopping by and listening to the second podcast in the “A Look Ahead” series. Next Friday, April 1, 2011, we will be talking with Co-Founder and Chairman Jamie Heywood about the transition from drug safety to patient safety. See you then!

PatientsLikeMe member afleishman


One for All: The Road Ahead with PatientsLikeMeInMotion™

Posted March 23rd, 2011 by

PatientsLikeMeInMotion

This Spring, as you’re out at disease-related fundraiser events, take note of the people in those bright blue t-shirts walking, running or biking by your side. Those are patients like you!

Since its launch in 2009, more than 1,700 people (including patients, friends and family members) have taken part in the PatientsLikeMeInMotion™ program to raise money and awareness for various conditions. Here are some fun facts about PatientsLikeMeInMotion and a video of some of our members who have participated.

2009 Quick Facts

  • 2009 marked the debut of the PatientsLikeMeInMotion program.
  • Approximately 40 PatientsLikeMe members signed up teams to participate in PatientsLikeMeInMotion and led more than 700 people on PatientsLikeMe teams across the United States.
  • In its first year, the PatientsLikeMeInMotion program donated over $9,000 for charitable disease foundations such as the National MS Society (NMSS), Parkinson’s Alliance and the ALS Association (ALSA).
  • The largest member team in 2009 was formed for the annual Parkinson’s Unity Walk in New York. It’s here where we first met and interviewed some of our members (see our YouTube page to meet them).

2010 Quick Facts

  • A breakout year for the program, PatientsLikeMeInMotion doubled our number of sponsored teams from 38 in 2009 to 60 in 2010.
  • PatientsLikeMe members led teams of more than 1,000 people total wearing the recognizable, bright blue PatientsLikeMeInMotion t-shirts to events across 15 states.
  • Together, member-led teams raised more than $15,000 for their charitable disease foundations through PatientsLikeMeInMotion donations.
  • PatientsLikeMe teams were present at 20 NMSS events and 12 ALSA events, as well as fundraisers run by The National Alliance on Mental Illness (NAMI), The Epilepsy Foundation of America and the Parkinson’s Unity Walk.
  • PatientsLikeMe had the opportunity to sponsor Team Mid New England at the U.S. Transplant Games in Madison, WI (see highlights here.)
  • In 2010, we also launched our PatientsLikeMeInMotion Flickr page to host all of the photos our teams have submitted over the years. Check it out.

So, what will 2011 look like for PatientsLikeMeInMotion? That’s entirely up to you! Do you have an awareness event in your area you would like to be a part of? Sign your run/walk/bike team up for PatientsLikeMeInMotion and count on us to support you – both online and off!

PatientsLikeMe member lscanlon PatientsLikeMe member afleishman


PatientsLikeMe at the NHS Innovations Expo

Posted March 21st, 2011 by

expo2011_logo-straplineIf you’ve ever tuned in to one of our podcasts or had a chance to view one of our videos, there’s a certain characteristic you might have noticed about me.  I’m British.  Very British indeed. During the course of my academic research career, I spent 6 years working alongside neurologists, psychiatrists, and a multidisciplinary team of nurses, speech and language therapists, physios, and occupational therapists at King’s College Hospital and the Maudsley Psychiatric Hospital in South London.  As you probably know, the United Kingdom (UK) has a very different health system to the United States (U.S.). The National Health Service (NHS), formed in 1948 as part of post-war reconstruction, has three core principles:  1) To meet the needs of everyone, 2) to be free at the point of delivery, and 3) to be based on clinical need rather than ability to pay.  Against an aging population and rising medical costs, however, the NHS needs to continually innovate in order to remain cost effective, and the UK’s coalition government has set an ambitious target to maintain quality of care while cutting £20 billion from the NHS budget (approximately $32 billion).

Earlier this month, PatientsLikeMe was invited to participate in the NHS’ second Innovations Expo in East London, a 2-day expo featuring a vast exhibit hall of innovations from the private and public sectors, as well as a packed schedule of seminars and platform presentations from Andrew Lansley (Secretary of State for Health) and Sir David Nicholson (Chief Executive of the NHS).  They spoke of plans for radical reform of the NHS, with more power being transferred from central government to General Practitioners (GPs, equivalent to U.S. Primary Care Physicians, PCPs) and much more of an emphasis on something that ties in with our core value: “Patients First.”

We were fortunate to have a “Masterclass Theatre,” where, on behalf of PatientsLikeMe, I was able to share some of our experiences in the U.S. and provide examples of successes we’ve had that might translate well to the NHS.  We also gave a couple of more intimate seminars which candidly discussed 5 lessons we had learned from 100,000 patients over the past five years.

In addition to PatientsLikeMe, there were a number of interesting innovations at the event, including a company that does what we do but for doctors (Doctors.net.uk), a patient health record that links into the NHS’ medical notes system and allows clinicians to help manage patients with rare conditions (PatientsKnowBest, founded by a doctor and chronic condition patient), and an information portal that helps provides clinicians with the best evidence to help support their decision making (NHS Evidence). We also attended the launch of an inspiring white paper from thinktank The Young Foundation entitled “Connect: Patients and the Power of Data.”  Sensible, compelling, and highly readable, the report starts off with a quote from the coalition government’s white paper on health that we might just make into a plaque: “Information is a health and care service in its own right: it must be freely available to all those who need it.” You can read the report for free here.

For PatientsLikeMe, the UK and the NHS in particular offers a number of interesting possibilities. Because there is less variability in access to care in the UK than the U.S., it might make a better environment in which to evaluate how much benefit our system can have for patients with serious health conditions.  The UK also has a strong medical science community and some of the brightest minds with whom to collaborate on research studies (see, for instance, our work with Oxford University).  Finally, the UK is an interesting place for us to operate because the system is more aligned to prioritize patient care over profitability; that’s not to say it’s flawless or that cost is not a factor in rationing access to some services. But if the current round of proposed reforms are implemented, it seems that physicians and care providers are going to be evaluated and rewarded on the basis of the outcomes they produce for patients, not just the number of procedures they perform. That sounds just like the world we’d like everyone to live in.

PatientsLikeMe member pwicks


A Place to Share About Serenagen and Serenagen Side Effects

Posted March 20th, 2011 by

Have you tried serenagen for stress relief?  Share your experiences with serenagen side effects, effectiveness, cost and more at PatientsLikeMe, a unique data-sharing platform that covers all types of treatments, including supplements and lifestyle modifications.

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 serenagenJoin PatientsLikeMe and add your experiences with serenagen side 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.

Join PatientsLikeMe


Share Your Experiences with Stresam

Posted March 19th, 2011 by

Stresam is an international brand of etifoxine, a non-benzodiazepine anxiolytic (anti-anxiety) and anticonvulsant drug.  It is used to treat anxiety disorders – such as general anxiety disorder (GAD) or social anxiety disorder or panic disorder – and to promote peripheral nerve healing in patients with peripheral neuropathy.

At PatientsLikeMe, where more than 120,000 patients are sharing their experiences with conditions, symptoms, treatments and more, two patients report using Stresam currently while two patients report discontinuing it.  The reported reasons for taking it include anxious mood, shortness of breath and heart palpitations, while the one reported reason for discontinuation is that “the course of treatment ended.”  Out of all four patients, only one reports Stresam side effects, rated as “mild.”

Given the prevalence of anxiety disorders, we know there are many others who may have tried Stresam to relieve their anxiousness.  If you’ve used Stresam, another formulation of etifoxine or other anti-anxiety medications, we encourage you to share your experiences (including side effects) to help other patients.  PatientsLikeMe’s unique data-sharing platform allows you to share detailed data about all types of treatments, interventions and lifestyle modifications that have helped you or simply had no effect.

JOIN PATIENTSLIKEME TODAY

Have you taken Stresam – or another brand of etifoxine?  Join PatientsLikeMe and add your experiences to our growing body of knowledge.  Then, stay to exchange advice and support, research common treatments and learn from other patients like you.

Join PatientsLikeMe


PatientsLikeMeOnCall™: “A Look Ahead” at Research (Episode 1)

Posted March 18th, 2011 by

Since 2006, PatientsLikeMe has made great strides in medical research for patients. Of course, all of the research that we do is made possible because of you, our members, and your willingness to openly share your health information, including your treatments, symptoms and outcomes.

Paul Wicks PhD, PatientsLikeMe Research and Development Director

PatientsLikeMe-led research has been published in at least six different scientific journals, including the Journal of Medical Internet Research and the Journal of Neurology, Neurosurgery, and Psychiatry. (See our Research page for a full list.) And, if you look us up on Google Scholar, you’ll see that PatientsLikeMe has been cited by others in more than 900 published scientific articles. We’re proud to have made such a noteworthy impact on medical research in five short years.

So what’s next? What can we achieve now that our patient members number more than 97,000? Well, that’s what this podcast episode is all about! Our Director of Research and Development Paul Wicks PhD stopped by PatientsLikeMeOnCall™ to discuss the future of PatientsLikeMe research, some of the challenges we face and the powerful influence patients like you can have when you share your health data.

Tune in to hear Paul’s thoughts here:

Thanks for stopping by and listening to the first podcast in this new series. Next Friday, March 25, 2011, we will be talking with our head of marketing and business development, David S. Williams III, about the importance of patients and industry working together. See you then!

PatientsLikeMe member afleishman


What Does “MS=” for You?

Posted March 16th, 2011 by

This week marks MS Awareness Week. In celebration of the theme this year (i.e., “MS=”), we are happy to tell the world about what MS equals to us.

At PatientsLikeMe, MS= over 22,000 patients sharing their MS journeys with each other and over 90 MS Mentors answering questions about everything from managing symptoms to choosing a doctor.

What can you learn about MS at PatientsLikeMe?

At PatientsLikeMe, MS patients can report their current and past treatments, including prescription drugs, supplements, over-the-counter medications, lifestyle modifications, procedures and more. They can also report their symptoms and side effects.

Here’s a glimpse of what our 22,000+ MS patients have reported:

What are our MS members talking about?

The current buzz among MS patients concerns an experimental vascular procedure called CCSVI and a new FDA-approved oral medication called Gilenya. Who’s tried them? And have they benefited? Our MSers are hashing it all out in our forums.

Another topic is feeling scattered when seeing one’s neurologist and other physicians. Fortunately, our members are helping one another bring information to their doctors in an organized and informative way. (See our Doctor Visit Sheet for guidance.)

How are our MS members making a difference?

PatientsLikeMeInMotion Team

For two years, our MS members have been teaming up with us through the PatientsLikeMeInMotion™ program to raise awareness about MS.

So far…

  • PatientsLikeMe has sponsored over 60 run/walk teams made up of over 800 participants.
  • PatientsLikeMe has sponsored member-led teams all across the United States and Canada.
  • Through our sponsorship program, PatientsLikeMe has donated over $11,000 for MS research.

In sum, MS + PatientsLikeMe = shared experiences that can lead to better outcomes. Now that’s a nice equation.

PatientsLikeMe member mcotter


Look Ahead with PatientsLikeMeOnCall™

Posted March 14th, 2011 by

PatientsLikeMeOnCall™  is proud to present a new podcast series called “A Look Ahead.”  Through these dynamic podcasts, we will be diving into the major shifts PatientsLikeMe sees ahead for patients, patient care and patient/industry collaboration.

David S. Williams III

At the end of 2010, PatientsLikeMeOnCall released an episode called “The Patient Rules.” In this group podcast, we sat down with Co-Founders Ben and Jamie Heywood, Chief Marketing Officer David S. Williams III and R&D Director Paul Wicks PhD to discuss how far patients like you have come in sharing health information and driving the healthcare process.

In this new four-part series, we will again be talking to each of them about the future of the healthcare industry. What changes are ahead in 2011? And what role will you play? To get you geared up for this series, here is a quick preview clip from my interview with David Williams about the importance of patients and industry working together.

The series premiere for “A Look Ahead” launches this Friday, March 18, 2011, with an interview with Paul Wicks. Look for the other interviews to run every Friday for the next three weeks.  To tune in, subscribe to the series on our iTunes page or listen to any of our podcasts on our PodBean page.

PatientsLikeMe member afleishman


Have You Experienced Catalyn Side Effects?

Posted March 13th, 2011 by

Looking for a place to share and learn about Catalyn side effects – either the side effects you experienced while taking this supplement or the lack thereof?  You’ve come to the right place.

Catalyn is a multivitamin, mineral and trace mineral concentrate that contains Vitamin B6, Riboflavin, Thiamine, Vitamin D, Vitamin C, Vitamin A and a proprietary blend of whole food ingredients.  Created by Dr. Royal Lee in 1929, Catalyn is the flagship product of Standard Process, which specializes in whole food supplements.   Using a high-vacuum, low-temperature drying process, the idea behind Catalyn is to provide nutrients and vitamins in their most potent and bioavailable form – the natural state.

At PatientsLikeMe, where more than 120,000 patients are sharing their experiences with conditions, symptoms, treatments and more, only one patient reports taking Catalyn as a daily supplement for general health.  Given the longevity of this 82-year-old product, which is designed to address vitamin deficiencies without “mega doses,” we know there are many others who may have used Catalyn as an over-the-counter treatment.  Did you find it effective?  Were there any side effects?   What dosage did you take?

If you’ve used Catalyn, we encourage you to share these types of experiences and more to help other patients.  PatientsLikeMe’s unique data-sharing platform allows you to share detailed data about all types of treatments, interventions and lifestyle modifications that have helped you, harmed you or simply had no effect.

JOIN PATIENTSLIKEME TODAY

Join PatientsLikeMe and add your experiences with Catalyn side effects, effectiveness, cost, dosage and more to our growing body of knowledge.  Then, stay to exchange advice, research common treatments and learn from other patients like you.

Join PatientsLikeMe


What Other Patients Are Saying About Solupred

Posted March 12th, 2011 by

Solupred is an international brand of prednisolone, a widely prescribed corticosteroid that modifies the body’s immune response and decreases inflammation. It is used to treat a host of inflammatory and autoimmune health conditions, including multiple sclerosis (acute exacerbations), organ rejection, lupus, psoriasis, asthma and ulcerative colitis.

At PatientsLikeMe, where more than 120,000 patients are sharing their experiences with conditions, symptoms, treatments and more, two patients report using Solupred currently while 68 patients report using another form of prednisolone.  What can we learn from these patients’ experiences?  Quite a bit, actually, thanks to PatientsLikeMe’s unique data-sharing platform.  For example, the most commonly reported prednisolone duration amongst current users is two years or more, while the most commonly reported dosage at PatientsLikeMe is 5mg daily.

Wondering about Solupred side effects?  Some of the commonly reported side effects of prednisolone include weight gain, heart palpitations, insomnia, dry eyes and abdominal bloating.  Check out the 22 treatment evaluations of prednisolone (the generic form of Solupred) submitted by our patients to gain even more insight.

JOIN PATIENTSLIKEME TODAY

Have you taken Solupred – or another brand of prednisolone?  Join PatientsLikeMe and add your experiences to our growing body of knowledge.  Then, stay to exchange advice and support, research common treatments and learn from other patients like you.

Join PatientsLikeMe


One for All: Ways You Can Share, Find and Learn at PatientsLikeMe

Posted March 11th, 2011 by

When patients join our site, a common question we get is, “Now that I’ve signed up, what can I do here?” One answer is that you can chart the real-world course of your disease and compare it against other patients. But that sounds a little complex, doesn’t it?

If we break it down into simpler terms, we are really talking about you sharing your health outcomes with each other, finding other patients like you and learning from the information that you have all shared. That’s why “Share, Find and Learn” is part of our core message at PatientsLikeMe, as it best explains how you can help each other with the in’s and out’s of your condition.

Share, Find and Learn

To give you a better understanding of what we mean, we recently asked a few patients like you for examples of how you’ve used PatientsLikeMe to “Share, Find and Learn.”

PATIENT 1 (MS)

SHARE: “I’ve shared as much information [as possible] about the medications I’ve taken and still take and the CCSVI procedure that I recently went through. ”

FIND: “It’s helped tremendously when there are others that have undergone the same treatment or procedure in that we can share updates or milestones.”

LEARN: “We are all in the same boat. I’ve learned a lot about diets, vitamins and exercise, but most of all, I’ve learned to always keep the faith and never give up on hope.”

PATIENT 2 (MS, asthma)

SHARE:  “On the graph of the Multiple Sclerosis Rating Scale with time [which monitors the progression of MS], you have added reference percentiles to let folks know how they are doing relative to the rest of the population.”

FIND: “I just searched for females between 30 and 65 with three stars and could easily see who was doing better than average and who was doing worse than average.”

LEARN: “If someone is trying to decide about ‘medication versus no medication,’ they can fairly easily spend some time comparing how those who take medication are doing versus those who do not and make a decision for themselves.”

PATIENT 3 (fibromyalgia, Lyme disease, peripheral neuropathy, Babesiosis)

SHARE: “It is fascinating…how what one person learned about their condition, how to deal with it and what is normal, etc., can be communicated to everyone via this website.”

FIND: “I would like to do a search based on other members who also have chronic Lyme disease.” (Note: This is now possible, thanks to the recent upgrade. Use the search filters on the Patients page to find the nine members currently reporting Lyme disease.)

LEARN: “I actually have relieved one of my symptoms, in part due to PatientsLikeMe- and have found validation for this new treatment through PatientsLikeMe that I hadn’t seen otherwise. I’ve been a member since November, so that is amazing success in a short time.”

Thanks to all three members for sharing their thoughts and experiences. Why not see what you can “Share, Find and Learn” today?

PatientsLikeMe member kbrigham


Share and Compare: What Have You Learned with InstantMe?

Posted March 9th, 2011 by

How are you feeling today – honestly?

instantme-choices

In December, PatientsLikeMe launched a new feature called InstantMe. It’s designed to allow you to chart how you are feeling day in and day out. Is today a bad day? Record it on InstantMe (found on your profile), and if you’d like, add a note explaining what’s going on.

With InstantMe, patients like you are able to learn about your day-to-day fluctuations in response to your symptoms, treatments and many other things, such as family stress or work issues. More than 13,000 of you have been using InstantMe for a little over three months.

So, what have you gleaned from it so far? Here’s a sampling of the feedback you’ve shared.

  • I really like Instant Me because I see that I am feeling better than I thought and noticed the weather really has an effect on me.
  • I’m more aware of the changes that have occurred since I had the CCSVI procedure. And using this new InstantMe has let me chart this almost on a daily basis.
  • I can record when and why I feel the way I do, like if I am trying a new supplement and such, or forgot to take my vitamins, or if my teen was home all week.
  • My neuro asked that I keep a diary of my issues and when PatientsLikeMe started InstantMe, that was a perfect format. This allowed me to track day to day changes in pain levels and V/S steroid input.
  • One thing I have noticed is that that feeling of being more run down at the end of the week is NOT my imagination. I also am curious to see what times of day are my “best” times to do mental activities.

What about you? We’d love to hear what you’ve learned from answering the question “How are you feeling?” on a regular basis.

PatientsLikeMe member emorgan