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A Year in Review: PatientsLikeMe in 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 …

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PatientsLikeMe @ The 20th International ALS/MND Symposium in Berlin

The 20th International Symposium on ALS/MND took place (December 8th-10th) in Berlin, Germany. This is the 4th ALS Symposium attended by PatientsLikeMe, and certainly the most exciting in terms of new findings. The annual symposium is a tremendous opportunity for researchers from around the world to meet and share new developments – it’s the big event for the ALS research community and attracts scientists from across the globe. PatientsLikeMe Chairman and Co-Founder Jamie Heywood and Research Scientist Timothy Vaughan, PhD presented three posters at the conference with some of the findings we’ve generated this year. The highlight was a poster describing our analysis of the patient-led study of lithium carbonate. Using new techniques that compared patients on lithium to carefully matched control patients, we determined that the drug had no effect on the progression of ALS. The poster was well received with good feedback from experienced experts in the field, and we are currently working on writing up a full analysis and description of our techniques. Our second poster described a small survey we did about emotional lability, also known as pseudobulbar affect (PBA). We found that although many ALS patients suffer from unusual or uncontrollable outbursts of laughter, crying, …

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Harnessing New Media for Patient Advocacy (Part II)

A few weeks ago, I was invited to present on behalf of PatientsLikeMe at the Arthritis Foundation workshop held in Newport, RI.  The presentation was on how to “harness new media for patient advocacy” – the same as what I presented at a workshop for non-profits in northern New England in August.  This time the audience included non-profits in the southern half of New England.  Among those in attendance were representatives from organizations that mean a lot to us, and our patient communities, including regional branches of the American Parkinson’s Disease Association, CFIDS & FM Association, and the Epilepsy Foundation. One of the highlights for attendees was an impassioned keynote speech by Rep. Patrick Kennedy (pictured above with me and my wife Emma) who advocated the use of the web to support mass organization of patients with serious and chronic illnesses to accelerate research and improve standards of care. We couldn’t agree more.  It’s exciting and validating to know influential decision-makers are recognizing the potential of communities like PatientsLikeMe.

Harnessing “New Media” for Patient Advocacy

The media is abuzz at the moment with stories about social networks like Facebook and Twitter, carrying pieces on the good (Facebook Fan Page raises $10,000 for a Silicon Valley Food Bank), the bad (Facebook users are leaving out of mistrust and boredom), and the controversial (Social networking site for living organ donors). In the health domain, there is a fascinating ongoing debate about the interaction of pharmaceutical companies with the internet (John Mack’s Pharma Marketing Blog is the main hub of discussion), as well as the ways in which non-profits should be using innovative new tools. That was the focus of a workshop recently convened by the New England chapter of the Arthritis Foundation at the Equinox Hotel in Manchester, Vermont. PatientsLikeMe was invited to share our experiences of using the internet to empower patients, change perceptions in the medical field, and effect real change through shared information.  Here are some of the topics discussed: This is not a new way to use old techniques Social media is a two-way street, and you have to engage with your audience with openness and transparency. The vast majority of people support your activities, but there will always be some people with …

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Charting the course of PLS and PMA

Primary Lateral Sclerosis (PLS) and Progressive Muscular Atrophy (PMA) are two rare variants of the disease ALS. Normally, ALS affects the upper motor neurons in the brain and spinal cord, as well as the lower motor neurons that send signals from the spinal cord directly to muscles. PLS and PMA are different because PLS only affects the upper motor neurons, and PMA only affects the lower motor neurons. It’s an important distinction for patients to be told about because the prognosis is less severe in these conditions.  On average, survival in ALS is typically reported to be 2-5 years, whereas for patients with PMA it’s more like 5-10 years and for PLS it’s even longer (often several decades). ALS itself is a rare condition, affecting some 30,000 people in the United States at any one time.  PLS and PMA each represent approximately 5% of the overall ALS community, so there’s approximately 1,500 patients with each condition in the U.S at any given time.  In April 2008, PatientsLikeMe added the ability for members of our ALS community to change their diagnosis to these rare conditions.  To date, we now have 182 patients with PLS and 270 with PMA. This is truly …

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Rare Diseases: Well-Done Online

There are rare diseases, and there are rare diseases. Here at PatientsLikeMe our first community was built for patients with ALS (estimated US Prevalence: 30,000), and in common with our other neurological communities there is a familiar list of challenges: low public awareness, little funding for research, and a lack of adequate treatments. However, over the past year or so I’ve really had my eyes opened to the differences between “rare” and what you might call “super-rare” conditions, such as Devic’s neuromyelitis optica. Nobody really knows how many people Devic’s affects as it is frequently confused with MS, but there are probably only a few thousand patients with this condition in the world. That’s why we’re incredibly proud that our Devic’s community currently has 136 registered patients sharing health data with one another; that’s more than 5 times larger than the largest study I’ve seen on the condition in the scientific literature (which included collaborators from around the world in seven specialist centers over the course of several years). I was privileged to be invited to speak at the annual meeting of Eurordis (The European Organization for Rare Diseases) in Athens, Greece, to meet with some of the leading online …

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Gambling in online PD patients higher than previously reported

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). In the Parkinson’s disease community on PatientsLikeMe, we came across several accounts from distressed members who had suddenly acquired a significant gambling problem. One member wrote: “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 …

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A new gene for ALS: What sharing your genetics could mean for research

In today’s issue of the journal Science two papers describe the discovery of a new gene for ALS (you can read the abstracts here and here). Around 90% of ALS cases are sporadic, i.e. we don’t know what causes them, but for 5-10% of patients the disease runs in their family (known as familial ALS, FALS). Until today, there was only one major causative gene that we knew about, called SOD1, which accounted for 20% of familial cases. Today’s new discovery of the gene FUS (also known as ALS6) accounts for an additional 3-5% of familial cases and was the result of an international collaboration between scientists in Boston, London, and Sydney. This is very exciting for research because the more we know about what causes ALS, the better our chances of finding an effective treatment through better understanding of the pathways involved in motor neuron degeneration. Here at PatientsLikeMe, we’ve recently upgraded our ALS platform to capture data on familial ALS patients’ known genetic mutations. The goal is to help familial ALS patients find another patient like them, and to enhance understanding of the phenotype of each mutation, e.g. if different types of mutation cause a faster or slower …

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ALS Symposium 2008: New features for ALS patients

This blog post is the second in a series from our attendance at the 19th International Symposium on ALS/MND in Birmingham UK in November 2008. When PatientsLikeMe attended the previous ALS/MND Symposium in Toronto Canada in December 2007, I was given a platform presentation to show the assembled clinicians, scientists and researchers what we had developed for patients with the condition. This year, as part of a session on the history of ALS/MND patients online, I was given the opportunity to show attendees some of the improvements we had made to the site since that time. * Percentile curves for patients with PLS – When I said that we had more than 100 patients with PLS registered on the site, there was a collective gasp from the audience. Our large sample has allowed us to show PLS patients how they compare with other PLS patients for the first time. (Available to PLS members of the ALS/MND community) * Geomapping – Patients on our system can see a map of the world and see registered users nearby using a Google Maps API developed by our resident geomapping whiz Steve Hammond. This allows patients in isolated areas, or even busy cities, to …

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ALS Symposium 2008: A history of ALS online

Back in November, Jamie Heywood and I attended the 19th International ALS/MND Symposium in Birmingham, UK.  As part of an ongoing series of blog posts reporting from that conference, I have put together a narrated slideshow which is an abridged version of a platform presentation I was asked to give at the conference about the past, present, and future of the internet for patients with ALS/MND. As you will see in the presentation, there has been a strong online presence in the ALS/MND world since the early 1990s. Over time, the proportion and representativeness of the patients participating has increased dramatically, to the point that we now have some 10% of the USA’s ALS/MND population registered on the site. Next up in our series…a blog post looking at some of our recent improvements to PatientsLikeMe for people living with ALS/MND.

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