3 posts tagged “ALS Untangled”

What We’re Reading at PatientsLikeMe

Posted November 7th, 2012 by

Here are some of the media items that grabbed our attention recently.

Four Things I Learned from Living with a Chronic Illness
Wise advice from a teenager who had to give up competitive gymnastics and find a new perspective on life after being diagnosed with a disease that causes chronic pain.

Access to Doctors’ Notes Aids Patients’ Treatment
A new study finds that patients better understand their condition and feel more in control when they can read their doctors’ notes (something you’re legally entitled to access).

Why We Need Ecological Medicine
Do we need exposure to a diversity of bacteria and germs for optimal immune health?  A thought-provoking essay about the “germ theory,” “hygiene hypothesis” and more.

What We're Reading at PatientsLikeMe.  Image Courtesy of Stock Free Images.

Coming Next:  Using an App as Prescribed
A New York Times piece about whether healthcare apps – now regulated by the FDA – could reduce costs and change the way we monitor health.

Help with ALS via Twitter
An article about our partner ALS Untangled and how they are applying scientific rigor to the investigation of alternative therapies in ALS, having reviewed 45 to date.

Mining the Internet for Speedier Alerts on Drugs
The Wall Street Journal examines the results of a study showing that Internet search algorithms can detect adverse events for certain drugs ahead of FDA warnings.


Celebrate the Role of Social Media Today

Posted June 30th, 2011 by

Mashable, the pioneering digital and social media news site, has pronounced today Social Media Day. Why? “Social media has changed our lives,” they wrote in 2010, prior to launching the event. “It has not only changed the way we communicate, but the way we connect with one another, consume our news, conduct our work, organize our lives, and much more. So why not celebrate?”

Social Media Day 2011, sponsored by Mashable

Mashable is encouraging everyone who uses social media to take part in the second annual celebration. Some examples including organizing a Social Media Day get together on Meetup, posting photos from your get together on Facebook and using the hashtag “#smday” on Twitter. We would add updating your PatientsLikeMe profile and reaching out to another patient like you to this list of possible celebratory activities.

That’s because, at PatientsLikeMe, we’ve seen how social media has transformed the lives of patients. Before, there was only the information and advice provided by your doctors. Now, you have access to a wealth of real-world experiences and data from patients around the globe. As a result, you can ask smarter questions, make better decisions and take greater control of your own care.

Social media has also helped to accelerate medical research. A stellar example is ALS Untangled, a research consortium that uses social media (including Twitter, PatientsLikeMe, NING and open-access journal articles) to investigate alternative and off-label ALS treatments. There’s also the unprecedented ability to survey and learn from thousands of patients, as R&D Director Paul Wicks discusses in this recent video.

So if social media can help both patients and researchers, it’s worth celebrating, no? Share your thoughts on how social media has impacted your life in the comments section below. (And, yes, that would count as another social media activity!)


Share Your Data to Untangle ALS!

Posted January 24th, 2011 by

Our ALS Community recently broke the 5,000-member mark, making it the largest of its kind in the world as well as the ideal platform for expedited research.  And that’s just what we’re working on.

Since the community’s launch in 2006, we’ve conducted a number of research studies, both internally and in collaboration with leaders in the field.  The goal is to turn up the answers that patients like you are seeking.  For example, can lithium slow the progression of ALS?  Or does limb dominance (aka “handedness”) correlate with ALS symptom onset?  Check out the findings from our patient-led Lithium and ALS Study as well as our work with the University of Oxford on handedness.

We also like to think of the dynamic, up-to-the-minute reports on our site, such as our treatment reports and symptom reports, as another form of “research.”   Every day, patients just like you contribute to these reports by sharing your real-world data, including what symptoms you’re experiencing, how you’re treating your condition and how well your treatments are working for you.

alsuNow, the data you share is helping even more people.  Through an exciting new partnership with ALS Untangled (ALSU), we are helping to take the data you share straight to the scientific literature – and at record speed.  ALSU is an international consortium of clinicians and researchers seeking to investigate alternative and off-label therapies for ALS using the Internet, namely Twitter, Ning and PatientsLikeMe.  Through these modern methods, they aim to provide “timely, accurate and scientifically valid analysis of alternative and off-label therapies.”

As they wrote in their mission statement, there are three phases to their cutting-edge approach:

  1. In the learning phase, they use their Twitter feed (@ALSUntangled) to collect ideas for potential therapies to investigate from patients just like you.  (Got something you want investigated?  Suggest it today!)
  2. Then, in the discussion phase, they import these targeted therapies into a closed Ning group and gather information on them from the consortium, including PatientsLikeMe.
  3. Finally, in the public release phase, they publish their findings as open-access articles in the prestigious journal Amyotrophic Lateral Sclerosis.  That means patients like you, caregivers, clinicians and researchers all over the world can read these reports in entirety for free.

Our first collaboration with ALSU focused on the use of Low Dose Naltrexone (LDN) for ALS.  The consortium analyzed data from the 31 members of PatientsLikeMe taking LDN to determine if there was evidence of benefit.  What did they find?  Efficacy data shared by these 31 ALS patients suggested that most did not notice any benefit, and side effects included headaches, nausea and diarrhea.  On this basis, along with a review of the literature, ALSU concluded that it does not recommend LDN for ALS patients at this time.  Read the full LDN study here.

Going forward, we hope that you will continue to share your evaluations of alternative and off-label treatments for ALS so that they can inform the world’s top researchers.  We’re thrilled that your data is being taken seriously by the wider medical community, and we encourage you to participate fully in this novel research project.

PatientsLikeMe member pwicks