17 posts from April, 2011

Share Your Experiences with Euphytose

Posted April 26th, 2011 by

Available without a prescription in France, Euphytose is an herbal treatment for anxiety and depression that contains six plant extracts:  Hawthorn, Passionflower, Valerian, Ballota foetida, Cola nitida and Guarana (Paullinia cupana).  The latter is available in France as an over-the-counter anxiolytic (anti-anxiety) agent.

Producing both sedative and stimulant effects, Euphytose combines traditional herbal remedies for anxiety with components that are thought to act on central benzodiazepine receptors.  It had been studied in one short, double-blind, placebo-controlled trial involving 181 adults, with a statistically significant effect found for both reduction in symptoms and clinical response to Euphytose over placebo at the end of the trial.  In terms of safety, it was well-tolerated in the study with no difference in the number of adverse effects compared with placebo – and no serious adverse effects.

At PatientsLikeMe, where more than 125,000 patients are sharing their experiences with all types of treatments, two patients report trying Euphytose.   The reported purposes were “Anxious mood,” “Panic disorder” and “Insomnia.”  Effectiveness was rated as either “Moderate” or “Slight,” while side effects included “Drowsiness” and “Problems concentrating.”  Here’s what one patient with panic disorder wrote on his Euphytose treatment evaluationMakes you a little drowsy, but helps in limiting the effects of expected stressful situations.”

JOIN PATIENTSLIKEME TODAY

Have you taken Euphytose or another over-the-counter remedy for anxiety and depression?  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


PatientsLikeMe Refutes Published Clinical Trial

Posted April 25th, 2011 by

screen-shot-2011-04-25-at-41612-pmCongratulations to our R&D team here at PatientsLikeMe for its most recent paper published in Nature Biotechnology (“Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm”).  The full paper has been made available by Nature so you can read the results and access all of the supplemental data and figures.

Below are links to some of the media coverage about the paper, as well as a link to our own news release announcing the study results.

A special thank you to all of the ALS patients on our site for sharing the data that helped create this new insight and accelerate discovery like its never been done before.  Now that we’re open to all patients with any condition, we know your sharing will inspire the masses to share and learn together.

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Marketwire (our news release)
PatientsLikeMe Social Network Refutes Published Clinical Trial

The Wall Street Journal
ALS Study Shows Social Media’s Value as Research Tool
(paper)
The Future of Social Network-Based Trials
(blog)

Boston Business Journal
PatientsLikeMe hits ALS study

FierceBiotech IT
PatientsLikeMe study challenges prior ALS claims

PatientsLikeMe member bheywood


How Much Do You Know About Autism and IBS?

Posted April 22nd, 2011 by

“When you have a child with special needs, you really start to feel like you’re constantly the squeaky wheel as you advocate for your child. After a while, you start to wonder…’is it me?’ But I’ve already found several other parent advocates who are going through the same thing.”

Autism Caregiver

It’s Autism Awareness Month as well as IBS Awareness Month! Now that PatientsLikeMe has opened its doors to any patient with any condition, it’s amazing to see how many patients have joined our site in such a little amount of time. As we continue to add new members and conditions daily, helping us to expand beyond our recent milestone of over 100,000 members, here are some facts about autism and irritable bowel syndrome (IBS) from our members.

Autism

Membership

  • PatientsLikeMe already has over 100 members with autism, even though autism patients and caregivers could only join PatientsLikeMe starting at the beginning of April.

What are the top treatments?

What are the major symptoms?

IBS

IBS

Membership

  • PatientsLikeMe already has over 270 patients with IBS, even though, like autism, IBS patients could only join PatientsLikeMe starting at the beginning of April.

What are the top treatments?

  • IBS patients are using more than 600 treatments, including prescription drugs, supplements, over-the-counter medications, medical devices, lifestyle modifications, therapies, etc.
  • The top lifestyle modification reported by our IBS patients is Rest, while Stretching is the number one exercise cited.
  • The most widely used prescription drugs reported by IBS patients are Duloxetine (Cymbalta), Pregabalin (Lyrica) and Tramadol (Ultram).

What are the major symptoms?

PatientsLikeMe member afleishman


Hawaii 5-0: PatientsLikeMe at AAN 2011

Posted April 21st, 2011 by

Here at PatientsLikeMe, we are not only focused on helping patients improve their health outcomes, but also on the cutting-edge research that enables those improvements. That’s why we couldn’t imagine better news when we learned that all five of our academic submissions to the American Academy of Neurology (AAN) were accepted for exhibition at their Annual Meeting.

AAN Annual Meeting 2011

But then we received even more good news: AAN 2011 would be in Honolulu, Hawaii! So we packed our bags two weeks ago and headed to paradise.

As home to over 45,000 patients living with neurological conditions – including epilepsy, multiple sclerosis (MS) and Parkinson’s disease (PD) – PatientsLikeMe is a logical partner for the AAN. Here are some highlights from three of the five studies we presented at the Annual Meeting (click on the title to see the poster for each):

  • Patient-Reported Clinician Adherence to Epilepsy Performance Measures of Quality Care. Last year the AAN developed guidelines for doctors treating patients with epilepsy. Naturally, we wanted to know: do patients like you observe their doctors following these guidelines during office visits? According to our survey, most doctors do, but epileptologists and neurologists perform better than non-specialists. Fewer of you felt that your doctors discussed treatment safety and side effects enough with them.
  • PatientsLikeMe, an Online Community: Benefits for Patients with Epilepsy. Here’s something we bet you already knew: there’s value in finding other patients like you! In our survey of epilepsy patients, we learned that 55% of you consider PatientsLikeMe “moderately or very” helpful in learning about the type of seizures they experience. 45% found it useful for charting seizures, and 30% felt they received better healthcare as a result. 27% each said that PatientsLikeMe was useful for managing side effects and for improving treatment adherence.

Yes, the weather was lovely in Hawaii, but that’s not the only reason we wish you could have been there. Our biggest takeaway was that so many researchers, doctors and industry partners want to hear from patients like you! They are excited about the work we have accomplished together already, and they are full of ideas about more that can be done. We flew home feeling exactly the same way.

That’s why we hope you’ll keep sharing, keep taking surveys and keep telling us what you really think. Because your message is getting across!

PatientsLikeMe member pwicks PatientsLikeMe member agraham


Tell the World: Video Contest Update

Posted April 20th, 2011 by

The countdown is on! There are only two weeks left for our patients to enter the PatientsLikeMe “Express Yourself” Video Contest and have a chance to win one of five American Express gift cards ranging from $150-500.

If you haven’t heard, we are asking patients to create a video of three minutes or less that answers the question, “How has PatientsLikeMe changed your life?” If you are thinking of entering the contest but not sure how to express yourself, here are some examples of how patients have answered this question:

  • “PatientsLikeMe is the main reason that I concluded I had been mis-diagnosed depressive, instead of bipolar, and just recently decided to try new medication.”
  • “For years, I had always taken just 10mg of Baclofen. I was told long ago by my neurologist that “too much Baclofen can cause weak legs.” Then I sign up here, take a peek at what you guys are doing, and find out I don’t take enough Baclofen to deal with my symptoms. Give the neurologist a call, no problem, and [I am] much, much better.”
  • “PatientsLikeMe has changed my life.  This is my outlet.  I shared and poured my heart…and connected with hundreds of people around the world.”

Wondering how would you express such things on video?  Check out the submission below from one of our first contest entrants, Roulette67.  Her video is titled “I Am Not Alone,” and it discusses living with bipolar II disorder.  “I’m bipolar, it’s not a brand on my arm, it’s not a scarlet letter on my chest,” she says in the video.  “It’s part of me, but it’s not me.”

Do you have your own story to share? Tell it to the camera, like Roulette67. Or you could sing a song. Or perhaps combine photos with text to illustrate your experience. There are countless ways to express yourself using video, so be creative!

If you’re feeling inspired to enter, read the complete rules and guidelines before you get started, and don’t forget that May 1, 2011, at 11:59 p.m. EDT is the official submission deadline.

PatientsLikeMe member afleishman


Do You Use Refresh Ultra to Treat Dry Eyes?

Posted April 19th, 2011 by

Refresh Ultra is an over-the-counter (OTC) brand of lubricant eye drops designed to help protect your eyes and keep them lubricated throughout the day.  How well does it work?  Are there any side effects?  And how much does it cost?  These are all things you can report when you share your experiences with others at PatientsLikeMe.

If you’ve used Refresh Ultra (either in the past or as a current treatment), we encourage you to complete a treatment evaluation to help other patients.  PatientsLikeMe’s unique data-sharing platform allows you to share detailed data about all types of treatments –including prescription drugs, over-the-counter drugs and supplements – that have helped you or simply had no effect.

Trial and error can be an expensive gambit when it comes to healthcare products like lubricant eye drops.  Save others from going down the wrong path by reviewing the products that you’ve found work best for dry eyes or other irritating eye issues.

JOIN PATIENTSLIKEME TODAY

Have you tried Refresh Ultra or another brand of eye drops?  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


The Patient Voice Heard Loud and Clear at AHCJ ’11

Posted April 19th, 2011 by

Last week, we had the opportunity to be a part of the Association of Health Care Journalists (AHCJ) annual conference in Philadelphia, PA.  Carla Johnson, medical writer for the Associated Press, invited PatientsLikeMe to be part of her session entitled “Tapping into the e-patient phenomenon.”  It was a great opportunity for us to help healthcare journalists learn more about how to interact (and coordinate interviews) with patients participating in online communities like ours.

What better way to represent the patient voice than to actually have a patient speak on your behalf?  We invited Pamela McGhee, an active member of PatientsLikeMe who had previously done some media interviews, to sit on the panel and provide some tips to journalists on what’s important to patients interviewees.  Pamela was a welcomed and refreshingly enthusiastic panel participant who shared those tips (i.e., the importance of following up after an interview or doing your homework beforehand) as well as her experiences of living with MS and using PatientsLikeMe to “improve her life.”

Moderated by Carla, the rest of the panel included Dan Childs, the coordinating producer for ABCNews.com, and John Novack, director of communications at Inspire.  Both had a lot to share about their experiences in coordinating and conducting patient interviews.  A video highlight reel is below, courtesy of Joy Robertson at KOLR-TV.

In addition to having Pamela there to share her personal experiences of interacting with the media, we also handed out these one-sheets, which outline how to arrange an interview at PatientsLikeMe, as well as four of our own tips for conducting successful patient interviews.

screen-shot-2011-04-19-at-34532-pm

Thanks again to Pamela for being such an inspirational and empowered patient, one willing to openly share her stories and experiences for others to learn from!

PatientsLikeMe member lscanlon


PatientsLikeMeOnCall™: “A Look Ahead” at Openness in Healthcare (Episode 4)

Posted April 15th, 2011 by

“I think we can see there are a lot of ways where openness can be powerful.  What’s necessary is to help facilitate openness and reduce the barriers to sharing medical information.” – Ben Heywood

PatientsLikeMe Co-Founder and President Ben Heywood

PatientsLikeMe Co-Founder Ben Heywood has blogged previously about openness and sharing – and how important they are for patients. In this edition of PatientsLikeMeOnCall, he talks about the progress we’ve made in achieving openness within the healthcare industry and his vision for the expansion of the patient voice.

How can we put patients back at the center of healthcare? What barriers do we need to break through so that patients like you can openly share your health information?  Ben answers these questions and more in the fourth and final episode of our “A Look Ahead” podcast series.

Tune in to Ben’s full interview here:

Did you miss any of the first three episodes?  Find them on our blog or iTunes page.

PatientsLikeMe member afleishman


Have You Experienced Lumiday Side Effects?

Posted April 14th, 2011 by

Wondering where you can learn about Lumiday Mood Enhancer or report Lumiday side effects?  You’ve come to the right place.  At PatientsLikeMe, more than 125,000 patients are sharing their experiences with all types of treatments, including prescription drugs, over-the-counter drugs, supplements and more.

A dietary supplement, Lumiday Mood Enhancer contains Vitamins B1, 3, 5, 6, 9 and 12, as well as Vitamin D3, L-theanine, 5-HTP, St. John’s Wort, Rhodiola Rosea Extract and Ashwagandha Root.  Together, these key ingredients are thought to help promote a positive mood, balance serotonin levels, control appetite and potentially reduce stress and anxiety.  But is it possible to achieve all that without side effects?

That’s exactly what you can find out when you connect with others at PatientsLikeMe.  Currently, one PatientsLikeMe member with multiple sclerosis (MS) reports taking Lumiday Mood Enhancer to treat her “anxious mood.”  She reports no Lumiday side effects and an effectiveness of “slight” or “none.”  Here’s what she writes on her Lumiday treatment evaluation:  “Under “normal” daily living I do think it helps. Right now I am under a lot of stress so I don’t see much help.”

JOIN PATIENTSLIKEME TODAY

Have you tried Lumiday Mood Enhancer or another mood-elevating supplement?  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


PatientsLikeMe® Poll Reveals Patients Share Health Data Online Prefer to Keep Quiet With Doctors, Employers

Posted April 13th, 2011 by

screen-shot-2011-04-13-at-123447-pmPatients Unveil Top Reasons Not to Share Health Information

CAMBRIDGE, MA–(Marketwire – April 13, 2011) – According to a new PatientsLikeMe® Poll, almost one in three (29%) patients have withheld certain health information from their doctor. Of the 4,364 poll respondents, all of whom are members of PatientsLikeMe’s online health data-sharing community (www.patientslikeme.com), nearly half (47%) indicate that they have chosen not to share certain health information with an employer, while 14% have withheld information from insurance companies.

“Here’s a population of arguably the most open patients, who share detailed data about everything from their treatments to their sex lives on PatientsLikeMe, and yet some of these individuals feel uncomfortable sharing with other stakeholders in healthcare,” says Jamie Heywood, co-founder and chairman of PatientsLikeMe. “If we’re all going to make healthcare better, then it’s time we really understand what’s keeping patients from sharing information. That insight is crucial to improving the system.”

In their poll responses, patients also identified some of the reasons why they chose not to share their health information. Patients’ unwillingness to share certain information with doctors is driven by more emotional triggers. Almost half (44%) say they didn’t tell a doctor about something related to their health because they “didn’t want to be lectured/made to feel bad;” second to that was fear of embarrassment (36%). What aren’t they sharing with doctors? Respondents said symptoms (41%), lifestyle information such as “diet, alcohol, exercise, or smoking” (39%) and failure to take a prescribed medication (29%).

Alternatively, the majority of patients who withheld information from an employer cite more practical implications. Sixty six percent (66%) of patients indicate the top reason as being “none of their employer’s business,” but nearly half (49%) say they are afraid of losing their job and about one-third (35%) are afraid of not getting a promotion. Finally, the individuals who kept certain health information under wraps from their health insurance companies report they did so out of fear of losing coverage (39%), fear of not having a specific treatment or procedure covered (39%) or fear of premiums going up (25%).

The complete PatientsLikeMe® Poll results can be downloaded here.

NOTE TO EDITOR: All poll results must be sourced as originating from PatientsLikeMe®.

Poll Methodology
Between March 22nd and March 29th, PatientsLikeMe invited all members who had been active on the website within the past 90 days to participate in the PatientsLikeMe® Poll; 4,364 members completed the survey. Mean age of respondents was 49 years (SD 12, range 13-84).

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on Twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]

PatientsLikeMe member lscanlon PatientsLikeMe member dwilliams


News Release: Survey Reveals PatientsLikeMe® Helps People With Epilepsy Improve Seizure Understanding and Medication Adherence

Posted April 12th, 2011 by

In today’s news…

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BRUSSELS, BELGIUM and CAMBRIDGE, MA–(Marketwire – April 12, 2011) – In a survey amongst people with epilepsy in the U.S. who have joined PatientsLikeMe®, thepilespyprofilee leading health data-sharing website for patients, respondents indicate that better seizure understanding and improved adherence are key benefits of using the site. The majority of respondents (55%) indicate a better understanding of their seizures, while one in four (27%) report improved adherence to treatment as a result of joining the PatientsLikeMe epilepsy community. When asked about their social interactions with other patients, one in three respondents (30%) said they did not know a single other person with epilepsy before joining the site; 63% of these said they were now communicating with one or more patients on the site.

The complete results from this survey of 221 epilepsy patients are being presented this week at the annual meeting of the American Academy of Neurology, in Hawaii, U.S. (April 9th-16th). In early 2010, PatientsLikeMe and UCB first invited U.S. epilepsy patients to share their seizure experiences, symptoms and treatments through the website; there are more than 3,600 members to date. UCB receives annonymized, aggregated data from the PatientsLikeMe epilepsy community…. >> Click here to see the full news release.


PatientsLikeMe Calls All Patients With Any Condition to Join

Posted April 11th, 2011 by

Today, PatientsLikeMe announces its expansion in the following news release. (You can click on the image on the right to see a visualization of real-time profile views on PatientsLikeMe.)

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CAMBRIDGE, MA–(Marketwire – April 11, 2011) – Today, PatientsLikeMe (www.patientslikeme.com) announces the expansion of its platform and invites patients with any condition to join. The five-year-old free online health data-sharing website was previously only available to patients with 22 chronic conditions (including ALS, Parkinson’s disease, HIV, depression, epilepsy, fibromyalgia, multiple sclerosis and organ transplants). In February, the company closed to new members and allowed its 100,000 members to test out its new design and upgraded functionalities, such as adding multiple conditions (or co-morbidities) to their health profiles and measuring their mental, social and physical well-being (or quality of life).

screen-shot-2011-04-11-at-84931-am“Every ten seconds on our site, a patient shares an answer to a survey question about their health. Approximately every minute, one of our members is viewing another’s profile to see these answers. It’s clear patients see the benefit of sharing deep health information,” says President and Co-founder Ben Heywood. “We’re excited to see how this openness and sharing will potentially change thousands more lives as we open the doors to every patient today.”

Since launching in 2006, members of the website have shared data on more than 9,700 treatments and 4,800 symptoms related to their chronic conditions. During that time, PatientsLikeMe also received requests from 23,000+ patients asking the company to “build a community” for more than 5,000 conditions, everything from the more commonly known conditions like rheumatoid arthritis, autism, diabetes and cancer to rare diseases like ankylosing spondylitis and Niemann-Pick disease.

Adds Heywood, “Patients can now share multiple conditions, symptoms, treatments and more through their profiles. With these changes, we’ve improved our ability to help people find more patients like them.'”


PatientsLikeMe member dwilliams PatientsLikeMe member lscanlon


What Kind of Scars Do You Have?

Posted April 8th, 2011 by

A recent search of the PatientsLikeMe forum reveals that there are thousands of posts that mention the word “scar.” Looking closer, you’ll see that there are discussions of physical scars – for example, from certain procedures or diseases – as well emotional scars.

One moving thread – entitled “A letter to help others understand you and fibromyalgia” – discusses the difficulty of scars and symptoms that are not visible.  “I cannot show you a physically open wound to show how much pain I’m in,” writes a patient diagnosed with fibromyalgia in 2008.  “You won’t see my scars as you would a person who, say, had suffered a car accident.  You won’t see my pain in the way you would a person undergoing chemo for cancer.  However, my pain is just as real and just as debilitating.”

Can you relate to this patient’s need to write a letter explaining her condition to friends and family?  And have you yourself overcome the challenge of getting others to understand your scars and symptoms, even when they are not immediately noticeable?  If not, this may be your chance.

Your Medical History in Scars

Here in Boston, the local NPR radio station, WBUR 90.9 FM, is running a special web series called “Your Medical History in Scars.”  Citing the fact that our bodies are a “walking medical record,” they’ve asked listeners everywhere to share photos and stories that illustrate their scars as well as how dramatically medical practices have changed.  Scroll through their flipbook for examples and submit yours today to scars@wbur.org.

What if your scars are emotional?  “Draw a picture of them,” recommends WBUR.  It could be your opportunity to finally create a visual that crystallizes your scars for others.

PatientsLikeMe member amorton


How Would You Evaluate Your Experience with Myrin P-Forte?

Posted April 7th, 2011 by

Myrin P-Forte is an anti-tuberculosis agent that contains ethambutol, rifampicin, isoniasad and pyrazinamide. An anti-mycobacterial treatment, ethambutol eliminates certain bacteria that cause tuberculosis and is used in combination with other drugs to treat tuberculosis and prevent transmission to others.

At PatientsLikeMe, where more than 120,000 patients are sharing their experiences with conditions, symptoms, treatments and more, one patient with HIV reports using Myrin P-Forte to treat “tuberculosis in the lymph nodes.”  This patient rates the effectiveness as “moderate,” reports experiencing two side effects (red eyes and feeling intoxicated) and offers the following tip on his treatment evaluation:  “Do not consume an excessive amount of alcohol the night before taking this treatment… nausea/vomiting, headache, etc., will be experienced.”

If you’ve been prescribed Myrin P-Forte, we encourage you to share your experiences to help other patients.  PatientsLikeMe’s unique data-sharing platform allows you to share detailed data about all types of treatments, supplements and lifestyle modifications that have helped you or simply had no effect.

JOIN PATIENTSLIKEME TODAY

Have you taken Myrin P-ForteJoin 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