ALS

CBS Evening News, BusinessWeek, Fibromyalgia: Oh, Just Your Typical Friday

It’s exciting times for PatientsLikeMe! Today, our new community for people with fibromyalgia goes live on our site.  Spread the word!  Let’s bring a new level of understanding to this disease in a way that nobody else can.  Next week: a blog series regarding this new community and the people in it. If you haven’t checked out the most recent issue of BusinessWeek yet, you’re in for a treat. Senior writer Catherine Arnst takes an in-depth look at how PatientsLikeMe is “changing the nature of drug research and the practice of medicine” in her article –  “Health 2.0:  Patients As Partners.” Finally, turn your channel to CBS Evening News with Katie Couric tonight to see PatientsLikeMe featured in a segment with medical correspondent Dr. Sanjay Gupta.  Part of a week-long series about patients finding medical information online, our piece will include interviews with a patient member, as well as our founders. We have lots happening, and lots more to come!  Stay tuned…literally.

National Family History Day

PatientsLikeMe believes in the benefits of openly sharing health information.  That is why we are happy to spread the word about National Family History Day, which had its fifth anniversary on Thanksgiving 2008. As families gather this holiday weekend, National Family History Day encourages families to become familiar with the health history of previous generations.  At PatientsLikeMe, we encourage everyone to take advantage of the family time to identify, discuss, and make a written record of family health problems.  Many health disorders such as ALS, Parkinson’s, Multiple Sclerosis, heart disease, stroke, and diabetes, run in families and across generations. Knowing your family history gives insight into your current health status, and lifestyles and environmental factors that may affect your disease risk. While there is talk of personalized medicine being on the horizon, collecting and interpreting family history information is a currently available, and practical personalized health tool. Health care professionals can use this valuable information to design individualized care programs to reduce risk of disease and promote overall health. So while you’re eating that feast and the leftovers this weekend, ask your family about their health history.  It’s good conversation and can help everyone.  Happy National Family History Day!

PatientsLikeMe Announces New Partnerships

At PatientsLikeMe, our Core Values drive all of our business processes including selection of partners. We are proud to announce our three newest partnerships which include both nonprofit and academic institutions. Note: At all times, our members can access information about what we do with their data, how we make money, and who is partnering with us. Accelerated Cure Project for Multiple Sclerosis – a national nonprofit organization dedicated to curing MS by determining its causes. Myelin Repair Foundation – the only non-profit medical research foundation solely focused on identifying myelin repair drug targets that will lead to treatments for multiple sclerosis. Penn State Milton S. Hershey Medical Center – one of the leading research institutions in the field, particularly around issues of quality of life (QOL) for patients suffering from ALS. What do these partnerships mean? Together, we can open the healthcare dialogue by sharing and learning from one another. As we say in our Openness Philosophy, “we are passionate about bringing people together for a greater purpose: speeding up the pace of research and fixing a broken healthcare system.

Let’s make clinical trials more rewarding for patients

I came across this Wall Street Journal article earlier this week which details how patients with life-changing illnesses are using online services such as EmergingMed to help them enroll in clinical trials. The article points out that only 3% of adult cancer patients participate in trials, citing lack of awareness as a crucial factor. They write: “studies show that the more likely culprit is ignorance… 85% of cancer patients were either unaware or unsure at the time of their diagnosis that participation in clinical trials was an option.” In addition, there are also systematic flaws in the disjointed way that trials take place which makes it difficult to get accepted into a trial and can make participation unsatisfying even if you do. Say you’ve got ALS (Lou Gehrig’s disease or Motor Neurone Disease), a progressive and incurable life-changing illness and you’re being treated at a specialist centre that runs a lot of clinical trials. Here’s a few scenarios that could happen: 1. The Drug X trial is full before you can participate. Even if you’re suitable for a trial, it’s a matter of chance as to whether you’ll be seen at the hospital during their recruitment window. National, online databases …

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ALS Patients: Give us the truth about cognitive change

One of the things we’re most proud of at PatientsLikeMe is our ability to rapidly carry out research. There are some obvious benefits online: patients can can take part whenever they want, take as much time as they need (often using assistive technology), and are more likely to be open and honest about subjects that could be embarassing. We recently published a paper in the European Journal of Neurology that’s a great example of this. For many years doctors have known that a small number of patients with ALS (~5%) develop frontotemporal dementia, which causes personality changes, unusual behaviour, and severe cognitive problems. A larger proportion (~33-50%) suffer much milder cognitive problems, such as getting words “stuck on the tip of their tongue”, finding it difficult to multi-task, or difficult to plan complex sequences of events like planning a vacation. A recent review in Lancet Neurology gave a thorough run-down of the literature, the ALS Association has published a guide for families, and there have even been two conferences held just on this topic. Despite this, our study of 247 ALS patients found that: 85% of patients were told they might experience problems walking only 11% were told they might …

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PatientsLikeMe Corporate Update: Q1 2008

This month marks the two-year anniversary of our flagship ALS community. It’s amazing to reflect on what we’ve achieved in just two short years. Not only did we build the world’s largest treatment and outcome sharing communities for ALS (1,800+ patients), MS (4,500+ patients) and Parkinson’s (1,300+ patients), but this year we began evolving into the powerful research platform we always envisioned we could be. At the heart of this research initiative are our new community reports, which analyze the makeup of our patient communities. In January, we released our first MS Community Report covering factors such as first symptoms, age of diagnosis, disease type, etc. Recently we released our ALS Community Report, with the Parkinson’s Community Report to follow shortly. You can find the much-anticipated results on the blog as well as the ALS forum. But that’s just the beginning. Your commitment to collaborative learning has now driven our evolution to the next level. On March 7th, we launched the ALS Lithium Study. As co-founder Jamie Heywood wrote in a recent blog entry, “Today, we allow patients to begin to answer how to treat ALS.” What could be more central to our mission than that? We are delighted to …

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It’s been two years!! ALS Community Report

PatientsLikeMe was born of a passion to provide the best tools for patients to participate in their own care, share experiences and change the way medical research is done.Thanks to our members and the dedication of our growing team, our first community, ALS, has now been open to the public for two years! The community includes over 1650 patients, the U.S. members represent over 4% of all the ALS patients in the States. Over three quarters of our members have entered substantive information about their treatment history and status. Each time a member adds information, that information benefits how other people care for themselves and heightens how we as a community contribute to medical knowledge and drug discovery. Already we have published exciting findings from our community. For example, hundreds of ALS patients completed Paul Wick’s survey on Excessive Yawning and the results were published in a psychiatry journal (Acta Psychiatica Scandinavica). Another exciting development in ALS is first real time drug study – on the use of Lithium in ALS. More published and presented research will soon be featured on our blog and in a new section on the site. Each project demonstrates how we, as a community, can …

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Does It Work? Lithium and ALS

by James Heywood Update (March 7, 2008):  PatientsLikeMe ALS Lithium Research released. Does it work? On February 12th of this year, Proceedings of the National Academy of Sciences (one of the leading science journals) published a paper entitled — Lithium Delays Progression of Amyotrophic Lateral Sclerosis. After 10 years researching ALS, I believe it is fair to say this paper includes the most promising suggestive set of data from a clinical trial ever published. I say “suggestive” because there are many flaws with both the information presented and with the publication process itself. These flaws make it so that patients and their doctors are left trying to draw conclusions about the use of Lithium to treat ALS, without actually having any realistic confidence in the data or its meaning. For a patient, there is genuine risk either way. Lithium is not a harmless drug, and, although it is widely used, it can have significant side effects if it is not monitored properly. In addition, the reality is that in several of the last clinical trials in ALS, including minocycline and topiramate, the patients in the treatment group did worse than those in the control group. So, fears about the risk …

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PatientsLikeMe at the Toronto ALS/MND Symposium

This year PatientsLikeMe was the major sponsor of the 18th International ALS/MND Symposium held in Toronto, Canada. Research scientist Paul Wicks, marketing officer Lori Scanlon, and community liaison Emma Willey were all in attendance to tell people about the site. We first started telling the ALS/MND community about us at the Yokohama conference in 2006, with Paul walking doctors and researchers through the site on a laptop. This year we decided to invest more in setting up an eye-catching booth which had people coming up to us to admire our space-age gadgets as much as to see the site! Over the course of 4 days we spoke to hundreds of conference delegates. Many doctors had said that they had been invited to join the site by their patients and were curious to find out more. We were able to use our new Google Mapping feature to show them where their local patients were, which had people queuing to see who they knew that was registered on the site! Several researchers were also interested in forming collaborations and we hope to be able to get our users involved in more research over the coming year.The most common questions people had for …

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PatientsLikeMe Update: November 2007

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 …

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