Spreading awareness for eczema in October

Posted October 27th, 2016 by

Did you know October is Eczema Awareness Month? Eczema is an itchy, red rash that can appear all over the body and affects more than 30 million Americans, including children. Symptoms can often become less severe as children grow older, but sometimes, eczema can actually start in adulthood. There’s no cure, but in many cases it’s manageable.

Here at PatientsLikeMe, more than 990 members are living with eczema and sharing about their symptoms and treatments:


Now that you’ve got the specs, ready to take action? Check out the National Eczema Association’s list of three ways to get involved in the last days of Eczema Awareness Month. And if you’re living with this condition, reach out and connect with others in the forum!


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Patients at work: Member Ellen on launching her own clothing line

Posted October 25th, 2016 by

PatientsLikeMe members often talk about how they’re more than their diagnosis. They’re patients, but they’re also people, with complex lives, families, hobbies and careers.

Today, we’re kicking off a series of blogs about that last one — working with a chronic condition. We’ll be featuring some enterprising members who have started (or are working on) launching their own businesses, and learning more about how they manage their health and their career goals at the same time.

First up is Ellen (edayan), a member of the bipolar community who designs clothes for curvy women and runs an online dress shop called Tiger Lily. When we caught up with her, she shared about her passion for designing, how living with a mental illness affects her creative process, and her inspiring message to women:

“I want women to feel good about who they are right now so they don’t miss out on living a full life … Life is too short for feeling you’re not good enough.”


Tell us a little about yourself. How did you first get into designing clothes?  

I first started sewing clothes for my daughter when she was a baby. She became quite the tomboy and I couldn’t even bribe her to wear the little dresses I designed for her, so I started selling them. I was so happy making clothes for children that I started my own children’s clothing and costume design business, but it was really more like a hobby than a career. The most popular thing I made was a retro boiled wool coat. Each one was different.

Tiger Lily’s message is “Love yourself — Now.” Can you talk a little about this and how you’re trying to inspire women through your clothes?

I gained a lot of weight on psychiatric medications for my bipolar disorder, which I’ve not been able to lose. I was so embarrassed and ashamed that I started hiding out at home. I didn’t want anyone I knew to see me. I didn’t appreciate the fact that I was still beautiful — just different. The world doesn’t treat you nicely if you have a mental illness or if you are not thin. I had two strikes against me, I thought, so I hid. During that time, I lost out on all kinds of important relationships and opportunities. Waiting until you can get yourself skinny isn’t a good reason to lock yourself away. I want women to feel good about who they are right now so they don’t miss out on living a full life. My message is to embrace your body, mind and spirit just the way you are. Life is too short for feeling you’re not good enough.

What’s your creative process like? What are some of your favorite pieces you’ve designed?

I actually like to sketch new designs when I am feeling a bit depressed. The depression slows me down and makes me more careful and practical. So, in a way, depression can be used to my benefit when it’s not too severe. After the depression cycle clears, I go back to the design and infuse it with colors and textures and some fun. Here is a sketch I made of a skirt and top that I constructed with some changes from the original idea. This ensemble will show on the runway in Phoenix Fashion Week in a couple of days! I’m really proud of it. Here are some of my original designs…

What has been the most challenging part of launching your own business, and what’s the most important thing you’ve learned along the way?

The most challenging part of starting my business is keeping the faith even when things don’t happen the way I’d like. I encourage myself to keep going and not get too frustrated with setbacks. Depression can be paralyzing at times. Usually, I can keep working through it, but sometimes I have to cross everything off my list for a couple of days until I’m well enough to function again. Having an online business is great because it’s flexible and I can “crash” when I need to and not lose customers!

The most important thing I’ve learned is to be authentic in everything I do. I don’t pretend to know everything about fashion, life or anything else. I am just me. But that is enough, and my customers want to connect with a real person. I guess the next most important thing is that I have a wonderful family and friends who are there waiting to help. I just have to ask.

You’ve said that designing clothes has been “such a big part of my recovery.” How has your art helped you manage your condition?

Designing and making clothing is fun, but it’s also challenging. It often distracts me from thinking about myself and the fact that I feel really, really bad inside a lot of the time. When I create something beautiful I get such a big thrill. It makes me happy for days. All of me goes into these designs — not just my happiness and imagination, but also my sorrows and tears.

When I get better at designing, I think my personality will become even more evident and people will see who I am in the colors and lines of my work. What I spend my time doing has always felt like the biggest part of my identity. Right now, I am a designer. I am not a mentally ill person, or a patient or a social services case number. I am a woman with talent and skills, and I am using these strengths to be successful. I accept that I experience severe emotional pain — it’s a fact of my life. I do everything I can to minimize that, but being creative isn’t just therapy or a way to “manage my condition.” Designing is a serious business for me — I am banking on it.

What are your future plans for Tiger Lily? Any career goals beyond this?

In the future, I would like more of the inventory in my shop to be my own work. I am especially interested in making one-of-a-kind items. So, I am planning to do more designing and less wholesale buying as time goes forward. I would like to open a brick-and-mortar store someday. I guess I’m trying to prove to myself that I can achieve success with this before investing in rent and utilities and store furniture, etc. I would like to continue donating to organizations that create new opportunities for people in recovery from mental illness and a host of other challenges. I’d like to create a fashion show of my own next year, and to keep developing new design skills.

But honestly, my goals are to grow a more courageous heart, to use my imagination in ways that light up the world, and to go as far as I can with what I’ve been given. I want to do all of these things despite the fact that I have a mental illness.

Do you have any advice for others with chronic illnesses who want to start their own businesses? 

Yes! Aim high. Don’t allow your fears to drown you. Set up all the safety nets you’ll need, but don’t think small because you have limits. You may discover that working hard on a project you believe in gives you energy, improves your mood, and helps you grow. If people tell you that your illness is the reason you can’t accomplish anything, find new people. Keep learning as much as you can and never, ever give up.


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PatientsLikeMe Launches Virtual Trial for ALS Patients

Posted October 25th, 2016 by

Study With Major Academic Medical Center to Evaluate the Potential of the Soy Peptide Lunasin to Reverse ALS Symptoms

DURHAM, N.C., October 25, 2016—PatientsLikeMe and The Duke ALS Clinic have just completed enrollment in a virtual trial designed to test whether Lunasin, a peptide found in soy and some cereal grains, is helpful or harmful to patients living with amyotrophic lateral sclerosis (ALS). The Lunasin Virtual Trial is the first study of the supplement in ALS patients and follows a review analyzing its potential to reverse ALS in ALSUntangled, a website for clinicians, patients and researchers to explore alternative treatments.

Duke ALS Clinic Director and ALSUntangled Founder Richard Bedlack, MD, said he first heard about Lunasin’s potential from Mike McDuff, an ALS patient who took the supplement and experienced dramatic improvements in speech, swallowing and limb strength.

“I reviewed Mike’s records and reports, and both his diagnosis and his improvements appeared real,” Bedlack said. “Of course, Mike might have an ALS mimic we don’t know how to test for, or his body may have found a way to beat ALS independent of treatment. But there is one more possibility: his Lunasin regimen might have actually worked. I was compelled to design a study to treat other ALS patients with the same regimen to test if anyone else improves.”

As part of the trial, 50 participants will make three in-person visits to the Duke ALS clinic to measure the supplement’s impact over the course of the year-long study. They will also complete virtual check-ins as members of PatientsLikeMe every 30 days to update their weight, complete an evaluation of their Lunasin regimen, and complete the ALS Functional Rating Scale (Revised, ALSFRS-R), a widely-used patient-reported outcome developed by PatientsLikeMe that allows patients to see their disease progression visually and in context.

Bedlack said the study’s design is patient-centric and eliminates many of the frustrations patients say are inherent in traditional clinical trials. The design also likely contributed to what Bedlack calls the fastest enrollment of any trial in ALS history: the virtual trial took just over five months to fill.

“There are no placebos, and we made the inclusion criteria very broad so that even ALS patients who can’t qualify for other studies due to their long disease duration or use of a ventilator can qualify,” Bedlack said. “We’re also limiting the burden on the participants by helping them check in online from the comfort of home. And we’ve already published the protocol on our ALS Reversals website. We’re taking a completely open approach so that anyone, anywhere, can see the details of what we’re testing and learn more about whether this is helpful, harmful, or does nothing at all. I think all of these factors made the trial very attractive to ALS patients.”

PatientsLikeMe began as a website for people living with ALS to openly share their experiences with each other and study alternative and off-label treatments. Vice President of Innovation Paul Wicks, PhD, said the company’s research focus gave ALS patients a science-based platform to monitor themselves, get ideas from other patients, and play a more active role in their own healthcare. That focus has also helped the company produce more than 30 published research studies on the condition, including a 2011 observational study in Nature Biotechnology that refuted the results of a 2008 clinical trial on the efficacy of lithium carbonate on ALS. More recently the company has worked with Bedlack to study the frequency of ALS plateaus and reversals. Findings from that study were recently published online and in the March 2016 print edition of the journal Neurology.

Anyone taking Lunasin outside of the Lunasin Virtual Trial is invited to separately track their experiences on PatientsLikeMe at www.patientslikeme.com.

ALS is a degenerative disorder affecting upper motor neurons in the brain and lower motor neurons in the brain stem and spinal cord. Symptoms include progressive weakness, atrophy, fasciculation, dysphagia, and eventual paralysis of respiratory function.

Study Design Methodology

The Lunasin Virtual Trial is a 12-month, widely inclusive, largely virtual, single-center, open-label pilot trial utilizing a historical control group. Participants will be asked to sign in or register for an account on www.patientslikeme.com with the help of the study coordinator and will be given a welcome packet that includes a one sheet description of the study, a checkup checklist, and the first month of a total 12-month supply of Lunasin. User IDs associated with participants’ PatientsLikeMe account will be recorded by the study coordinator and shared with study staff at PatientsLikeMe. After the initial in-clinic visit, participants will be asked to enter the following data online: weight, Lunasin study drug regimen evaluation, and their ALSFRS-R score.

About PatientsLikeMe

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services, and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 80 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact                                                                                                Margot Carlson Delogne

“I have been empowered to face the challenges of my condition” – Member Deb shares her journey with type 2 diabetes

Posted October 20th, 2016 by

Meet Deb (optimisticrealist), a self-described optimist who found no challenge too daunting, exercised daily and maintained a healthy diet. We recently caught up with her and she told us how her type 2 diabetes diagnosis changed the way she thought about what it meant to be healthy.

Learn more about Deb’s story and what she had to say about empowering herself through education, finding veganism and learning to live with her new normal.

Tell us a little bit about who you are. What was life like before your diagnosis?

I have always been an optimist, nicknamed Pollyanna for my focus on the bright side. I had the sincere belief that with creativity and perseverance there was no challenge that I could not surmount. If all else failed, I could reframe the situation to find the positive.

How has life changed since your diagnosis?

Having had none of the classic symptoms, my diagnosis of type 2 diabetes completely blindsided me and caused me to wonder if optimism was just another word for denial.

I was diagnosed while in the hospital and sent home with prescriptions but no instructions about how to live with my new reality. I will never forget standing at the pharmacy counter at 10 pm on the day I was discharged, exhausted and confused, getting a crash course in how to use my glucometer and lantus.

For the first weeks, I slept with the lights on as if somehow that would protect me from…what? I awoke each morning thankful for having awakened but my second thought was that there was another deer-in-the-headlights day ahead.

I couldn’t live like that, didn’t want to live if that was to be my life. I had believed myself a healthy person, exercised almost daily and had a physical job, ate no junk — yet here I was with a serious, chronic, progressive condition. I struggled with self-blame and regret and became depressed. I knew that the only course for me was to take charge of the situation, and that meant learning everything I could about diabetes management.

I spent every free moment online and I began to have hope that I could improve my condition or at least delay its progress and avoid complications. The greatest revelation was reading about veganism and diabetes. I found a registered dietician who is also a certified diabetes educator and herself a vegan. I was already vegetarian for many years so I decided to give it a try. It has changed my life, and my diabetes, for the better, in a number of ways.

Within two weeks of my last bite of animal food, I was off all insulin completely. After a lifetime of struggling with my weight, the pounds came off at the rate of about 1.5 pounds/week — effortlessly. As I approach the two-year anniversary of my diagnosis, I have had three consecutive a1c tests under 6%, test my blood glucose only once every other day, and never count a carb! I have been able to lower my blood pressure and have maintained my weight loss for over a year.

In the forums you talk about the importance of maintaining an exercise routine. What motivates you?  

I am a lifelong exerciser, but due to extreme fatigue I was unable to work out for months. After many tests to rule out other causes, my doctor was persuaded that the drug side effects were the culprit. I couldn’t wait to get back to the gym! But it has been a long and winding road to regain lost strength and endurance. I am motivated to keep at it because I know that both my blood pressure and blood sugar are dramatically improved, and I even break a sweat some days! I have not missed a day in about 6 months…some days are easier than others but my mantra is “do what you can when you can.”

In your profile you mention struggling to come to terms with your condition and the way you thought about your health. What advice can you offer others who may be going through the same thing?

My advice to others who are feeling overwhelmed by their diagnosis is education, education, education! An educated patient is an empowered patient. Learn everything you can from reliable, evidence-based sources, then teach your doctor. If your doctor is resistant to an educated, empowered patient, fire them and find a new one.

Has PatientsLikeMe has helped you manage your condition? What does it mean to you to donate your data?

PatientsLikeMe has been a tremendous resource for me in managing my condition. I have explored a number of online sites and it is by far the most comprehensive compendium of information about a wide array of conditions. I love being able to read about real patients’ REAL experiences with treatments, it is invaluable as a way of tracking my own data, and most of all, I find the forums a wonderful, welcoming, civil place to learn from and help others. PatientsLikeMe is as much a necessary part of my day as eating, sleeping and exercise!

I have been empowered to face the challenges of my condition by reading evidence-based research. Donating my data is a way of “paying it forward.”


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Think pink in October: Breast Cancer Awareness Month

Posted October 18th, 2016 by

Pink may not fit the fall color scheme, but come October, it crops up everywhere to mark the start of National Breast Cancer Awareness Month. It’s one of the more high profile awareness efforts, but how much do you really know about the condition that affects over 1,900 PatientsLikeMe members?

Let’s test your knowledge. How many of the facts* below from the National Breast Cancer Foundation (NBCF) did you know?

  • One in eight women in the United States will be diagnosed with breast cancer in her lifetime.
  • Breast cancer is the most commonly diagnosed cancer in women.
  • Breast cancer is the second leading cause of cancer death among women.
  • Each year it is estimated that over 246,660 women in the United States will be diagnosed with breast cancer and more than 40,000 will die.
  • Although breast cancer in men is rare, an estimated 2,600 men will be diagnosed with breast cancer and approximately 440 will die each year.
  • On average, every 2 minutes a woman is diagnosed with breast cancer and 1 woman will die of breast cancer every 13 minutes.
  • Over 2.8 million breast cancer survivors are alive in the United States today.



The NBCF also has free tools you can use to learn more about breast cancer, from spotting the first signs to managing your diagnosis:

Early Detection Plan

Create an Early Detection Plan and invite others to do the same through their online site or using the mobile app.

Beyond the Shock

Share Beyond The Shock, the NBCF’s breast cancer educational resource, with friends and family. This free and comprehensive online guide to understanding breast cancer is a resource for women who have been diagnosed with breast cancer, a place for loved ones to gain a better understanding of the disease, and a tool for doctors to share information. Here you can learn through a series of educational videos, ask and answer questions about breast cancer and hear inspirational stories from breast cancer survivors.


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“Listen to yourself.” Member Daniela opens up about life with MS and psoriasis

Posted October 13th, 2016 by

Daniela (DanielaO) is living with multiple sclerosis and psoriasis  in Puglia, Italy, and loves crafts, art history, music and traveling. She recently opened up to us about getting her first diagnosis at age 14, managing multiple conditions, and how connecting with others on PatientsLikeMe makes her feel “present and part of a whole.”

Here’s what she had to say about reinventing herself and finding support from others who understand.

Tell us a little bit about yourself. What’re your hobbies and passions?

Ciao, my name is Daniela, I am from Tuscany and live in Puglia, Italy. I like traveling, seeing new landscapes, meeting people and learning about their cultures. I studied Fine Art and I love to make things with my hands. I am passionate about crafts, art history and music, particularly baroque.

What was your diagnosis experience like?

At the age of 14, I had psoriasis. My skin became like a map of red spots. Very stressful. On turning 20, I was diagnosed with Graves-Basedow, as my thyroid was not working adequately. Big stress. I was 39 years old when Miss Multiple Sclerosis came to visit me. Very distressful, especially as I was bringing up two children on my own. Now I am aware that these diseases are caused by immune system dysfunctions.

How has life changed since your diagnosis?

Having psoriasis, prompted/pushed me to try to understand why. The first book I read about healing was The Doctor Himself by Naboru Muramoto. Since then I learned many things about foods’ properties, how the quality of my thinking and emotions can modify the chemistry in my body. I did seminars learning why and how to maintain a healthy gut. I believe therefore that, mentally, I am responding well. Of course, there are really bad moments, but I’m so happy when they leave.

In the forums you talk about “reinventing” yourself, how has that helped you cope with your MS?

Because of MS, for several years I studied the Method Feldenkrais and became a Feldenkrais teacher. It has been a big challenge for me: Method Feldenkrais is about body movements, “talking” to the nervous system. It increased the awareness of myself and the world around me, more confidence and strength.

You mentioned that being on PatientsLikeMe makes you feel less alone and more curious – how has it been for you to track your health and connect with others on the site?

Multiple sclerosis symptoms are like the waves of the sea, they come and go and are never the same. Made of so many tonalities and degrees. At the moment, keeping a record of my health helps me a little. To be connected with others is very helpful. I live in a gorgeous place in the countryside, but this means I am cut off and isolated. To be able to interact with people who can understand me, makes me feel present and part of a whole. Of course, there are Italian forums, but I like to go far…

What advice can you give others with MS?

Just one, easy advice: Listen to yourself. I do have very special advice for those affected by psoriasis: find a doctor who knows Doctor Coimbras’ Protocol and ask about taking high doses of vitamin D3. I started taking it for MS since April 2015, after few months my psoriasis disappeared. After 40 years I was finally free of it. This is a great achievement. Thanks, Team at PatientsLikeMe, for giving me this great opportunity.



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PatientsLikeMe Names George Parker Executive Vice President of Human Resources

Posted October 12th, 2016 by

Seasoned HR executive brings 30+ years of experience to the role

October 12, 2016 – PatientsLikeMe today announced the appointment of George Parker as Executive Vice President of Human Resources (HR). In the newly-established role, Parker will oversee all aspects of human resources, with a focus on talent acquisition and development. The newest member of the senior leadership team, George will report to CEO Martin Coulter.

“PatientsLikeMe continues to expand its talent pool to support our strategic agenda and growth,” said Martin Coulter, PatientsLikeMe CEO. “George’s arrival ensures we are equipped with the executive experience to scale our human resources operations and to create an exceptional environment for our staff to thrive. We are delighted that George, with his depth and breadth of experience, has joined our team.”

Parker has more than 30 years of human resources experience in high growth and established organizations. Before joining PatientsLikeMe, he was Senior Vice President and Chief Human Resources Officer at Forum Pharmaceuticals, a pharmaceutical company focused on serious brain diseases. Prior to that, from 2010 to 2015, Parker was Vice President, Global Human Resources at Molecular Devices, LLC, a life sciences operating company of Danaher Corporation. He has also held senior HR positions at Cyberonics, Inc., Perkinelmer Instruments, and Bayer A.G., where he effectively led organizations through change and growth.
“Having spent the majority of my career in the life sciences industry, I’m thrilled to join an organization that recognizes the importance of patient-centricity and the need for patient data to support healthcare decisions,” said Parker. “And ultimately, the good that we can do – as an organization, for our members living with chronic health conditions – is a direct result of the individuals we employ, how we develop and motivate our team, and how we drive internal collaboration. That is what energizes me about this role.”

Parker holds a bachelor’s degree in mathematics from Hobart College.

About PatientsLikeMe

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services, and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 80 research studies. Visit us at www.patientslikeme.com or follow us via our blogTwitter or Facebook.

Kat Bragg

“I have been trying to push myself more, little by little.” Member Christopher shares his journey with PTS

Posted October 11th, 2016 by

We recently got the chance to talk with Christopher (crine312), a computer-savvy dog lover and U.S. Air Force veteran living with PTS and bipolar. Christopher opened up about life after serving in the military — how he sometimes still  thinks in military time and tries to avoid news reports about war — and the challenges of holding a job with PTS. Get to know him him better below, and see what he has to say about the PatientsLikeMe community: “I keep coming back and posting in the hopes that I, in turn, can help someone else.

Can you tell us a little about yourself and what you’re interested in?

First, I am adopted. Due to being adopted, I have a rather LARGE family. I have five older brothers and sisters, and seven younger brothers and sisters. Due to the adoption, I am the youngest of six and second oldest of nine (my oldest half-sister and I were adopted by the same family). I grew up in Charleston, South Carolina as a Navy brat. My interests are reading anything I can put my hands on, computers, gaming and my dogs.

After serving in the Air Force, how has it been adjusting to everyday life again?

In some ways it is rather hard adjusting to civilian life. First, I still eat too fast. Second, I have to think in “military” time, since it helps me with timing and alarms, and translate it for others. Third, in the North, they are not used to the “Yes, Ma’am,” “No, Ma’am,” “Yes, Sir” or “No, Sir,” and I have to mentally cut myself off at “Yes” and “No.” Fourth, it was especially hard to watch news reports of the war in Iraq and Afghanistan due to seeing or hearing names of people I had served with or knowing that equipment I had worked with was being used and what it could do. I had to avoid Greta Van Susteren especially, since she posted names before breaks on her show on Fox News. Finally, it was hard to come back to civilian life and face some people who, not knowing anything, would call me a killer. It took a long while to grow a thicker skin and some help from Vietnam Veterans who could identify with the same problems.

You mention in your profile about the challenges of working with PTS. Can you share some of these difficulties?

Hypervigilance, although it was a good thing in the military and drilled into you daily, just leads you into paranoia and anxiety about everything. I second guess everything I do and I have to do it perfectly or as near-perfect as possible. Most jobs have only been six months, mainly because I lose focus or get bored (I do not feel challenged). I have a lot of lows that are what I call “energy sappers.” At these times, I do not really feel like getting out of bed or doing anything. Another challenge I face is forgetfulness, which my psychiatrist says is “normal” for PTS and some bipolar patients (unfortunately, I have both). I can and will forget what seem to be simple things — wallet, keys, phone or words. It is frustrating to search for my wallet, keys or phone when they are right in front of you the whole time. I used to be a spelling bee champion while in school, so imagine how irritating it is to have to search for the word that should be right on the tip of your tongue, but is not.

Along with PTS and bipolar, you’re also living with other conditions including diabetes — how has it been managing multiple conditions?

It has been difficult at times. My lows are usually extra low (PTS and bipolar II do not play well together). I am irritable if I go too long without my Metformin. I have learned quite a bit about my limitations, but have been trying to push myself more, little by little.

You’re pretty regular about updating your symptoms and tracking your health on PatientsLikeMe. How has your experience on the site been, and what keeps you coming back?

I have had positive experiences with the site since I joined it. I have found that the people are helpful and insightful. I have learned about alternative treatments I want to try. I keep coming back and posting in the hopes that I, in turn, can help someone else.

Things that help me in my everyday life are my wife and friends who encourage me. I have dogs who help liven up my day, no matter how annoying they can be at times. I play games on the Xbox on days that are especially bad, it helps to distract my mind from things.


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Mental Illness Awareness Week: More understanding, less stigma

Posted October 5th, 2016 by

Did you know it’s Mental Illness Awareness Week? Or that tomorrow, October 6, is National Depression Screening Day? Each year, the National Alliance on Mental Illness (NAMI) works to overcome stigma and provide education and support for those living with mental illnesses.

Whether you’re living with mental illness, know someone who is, or just want to do your part to help change the way the world sees mental health, get involved by taking the #StigmaFree pledge.

But first, check out this roundup of stories, study results, and more from the past year — all inspired by members from PatientsLikeMe’s mental health community:


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Bringing the patient voice to clinical trials

Posted October 3rd, 2016 by

PatientsLikeMe has a long tradition of bringing the patient voice into drug discovery and development, but it’s only been in the last year or two that industry has been tuning in to hear what that voice is saying about clinical trials. For the last 18 months, we’ve been asking many of our members about their attitudes toward and experiences with clinical trials, and working to ensure pharmaceutical companies understand what patients want most from trials, now and in the future. We talked with Jeremy Gilbert, Vice President of PLM Health, and Paul Wicks, Vice President of Innovation, about what we’ve found, and how that’s already helped to change the design and execution of trials and their future direction. Jeremy will be presenting more about this topic and details of a key project with AstraZeneca and Takeda that leverages the patient voice in new ways at the Patient-Centered Clinical Trials Conference in Philadelphia on October 11. More info about discounted tickets below.


Jeremy Gilbert, Vice President, PLM Health

You’ve surveyed more than 1,400 people about their experiences and opinions with clinical trials. What have they shared, and what has PatientsLikeMe done with that information?

Jeremy: A lot of people in our community are living with life-altering, degenerative conditions, and they’re acutely aware of the importance of new drugs coming to market to address their problems. In conditions like MS, where there are perhaps a dozen treatments on the market, people are keenly aware that the drug they’re taking may stop working, so there is great interest in helping new drugs come to market. Our members are vocal, too, about how involved they want to be. About 92 percent of our survey participants said they would be willing to help researchers design clinical trials to make them better for patients. At the same time, our industry partners are looking for ways to improve trial participation, especially since trials will grow more complex. So we’ve found these two groups want to come together to improve the trial experience for everyone. And there’s no better place to start than by involving patients in the trial design process.

Paul: The state of art in designing trials has been to use the advice of physician experts and to review literature and published papers, but patients have been left out. Researchers have told us this is because of legal and regulatory concerns about asking patients about experimental treatments; they don’t want to be seen as promoting a treatment that hasn’t yet undergone testing. They also cite their lack of experience and fears about the extra time it might take them as reasons why they’ve carried on with the status quo. We’ve long believed that online communities like PatientsLikeMe provide a great vehicle to attack those barriers. We can act as an honest broker of information between researchers and patients who want to help, we’ve developed a repeatable methodology to gain patient input, and we’re delivering results in a matter of weeks to researchers to improve their protocols. Increasingly now researchers are coming to us before they design their trial to incorporate the patient voice, which is a great step.

Does what patients want from trials depend on the condition they have?

Paul Wicks, PhD., Vice President, Innovation

Paul: Some elements, such as their desire to altruistically help other patients like them, stay remarkably consistent. But depending on their demographics and the impact of disease, we do see a lot of variation. Working age adults might want extended hours so they can participate outside of normal business hours, whereas older people might prioritize having transport organized for them. It really depends on the aim of the study as much as the condition; some trials are for drugs that slow the progression of a disease, while others are to treat specific symptoms or even to take an existing drug and make it more convenient to take, such as moving from an injection to a pill. Against that you’ve also got the overall commitment required to the trial protocol such as the number of study visits, their duration, any special testing that people have to undergo and, of course, any special measures put in place to mitigate those burdens. We think patients are interested in participating in research in general because of altruism, that they choose to enroll in a particular trial because of its objectives, and that they stay enrolled because of their relationship with trial staff and the level of burden the study incurs on their daily lives.

The design of a trial is just the start. What happens as trials begin, or end?

Jeremy: We’re starting to see another gap now, which is that companies have no way of soliciting feedback from patients as they participate in a trial, to find out what patients think of real trials. This is a surprise, because given most of us are consumers, we’re used to being able to give feedback about a product or our experience at any time. That inspires us to think about how to gather patient input not just about a trial’s design, but also during the trial itself, and even after it ends. And if we can figure out how to share the knowledge that’s gathered, that would help industry design and run even better trials in the future.

Where do you think trials are headed in the future, and how is the idea of patients as partners instrumental in guiding that direction?

Paul: Today, taking part in a clinical trial is like having a part-time job. In the future, we want it to be much more convenient and to harness the digital technologies that have become a normal part of daily life. We’re also looking at novel technologies to see if we can do away with some of the aspects of trials that patients dislike, such as placebo arms. Using online digital platforms, it might be possible to produce enough carefully-matched historical controls to more rapidly identify when a treatment is having an effect. That could reduce costs, speed up trials and ultimately increase the number of “shots on goal” that researchers can take to fight disease.

Note: Jeremy will be presenting more about this topic at the Patient-Centered Clinical Trials Conference in Philadelphia on Tuesday, October 11 at 2:00 PM. He’ll be joined by Arnold Degboe, Director of Patient Reported Outcomes, Health Economics and Outcomes Research at AstraZeneca. They will talk for the first time about their work to change clinical trials with patient feedback. Discounted tickets for patients and industry participants are available from the conference organizer. Please contact Katie Gadsby for further information at kgadsby@eyeforpharma.com.



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Cancer Awareness in September: prostate, thyroid and ovarian

Posted September 29th, 2016 by

September is all about education — and not just because it’s back to school month. It’s also the official awareness month for three different types of cancer: prostate, thyroid and ovarian. Here’s a snapshot of what national organizations have done to spread more understanding…


Prostate cancer: #StepUp, get checked

The Prostate Cancer Foundation (PCF) has launched a #StepUp campaign to empower men to take control of their health and encourage their families to support them. It’s also about early detection — have you or men in your life been screened for prostate cancer? Get checked, and learn more in these helpful guides including questions to discuss with your doctor.


Thyroid cancer: Get a neck check

With tips, awareness tools, graphics and more, the Thyroid Cancer Survivor’s Association offers enough information for people to stay involved throughout the year.


Ovarian cancer: See the signs, #KnowOvarian

Do you know the common signs of ovarian cancer? It can be difficult to detect, so the National Ovarian Cancer Coalition has been using the hashtag #KnowOvarian this month to gain more attention for this condition that affects 1 in 75 women. Check out the website to learn more about the risks, symptoms and what you can do to get involved.



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Global PF Awareness Month: An interview with Dr. Cosgrove from the Pulmonary Fibrosis Foundation

Posted September 26th, 2016 by

September is Global PF Awareness month, and a few weeks ago,  members of the PatientsLikeMe PF community helped us kick it off by sharing in their own words what it’s like to live with this condition. The month is winding down now, so we caught up with our partners at the Pulmonary Fibrosis Foundation (PFF) to learn more about the latest research as well as a new national registry for PF patients. Below, check out our recent interview with Dr. Gregory Cosgrove, Chief Medical Officer at the PFF, and see what he has to say about the future of PF treatment.

Tell us a little about the Pulmonary Fibrosis Foundation— how did you get started with it?

I feel very fortunate to be a part of a team of dedicated medical experts, staff, and volunteers who devote their time and effort to advancing the Pulmonary Fibrosis Foundation’s (PFF) mission. Two brothers, Albert Rose and Michael Rosenzweig, PhD, founded the PFF in 2000 after losing their beloved sister Claire to PF. Both brothers were also diagnosed with the disease and subsequently passed away. Their vision and dedication continues to inspire us to support the Foundation’s mission to mobilize people and resources to provide access to high quality care and lead research for a cure so people with pulmonary fibrosis will live longer, healthier lives.

Since 2014, I’ve had the wonderful opportunity to serve as the Chief Medical Officer (CMO) at the PFF overseeing medical affairs to help facilitate and drive key initiatives. In that time, the Foundation has worked with the pulmonary fibrosis medical community to establish the PFF Care Center Network (CCN), where people living with PF can find experienced medical professionals who understand their disease and support services to improve the quality of their lives. Simultaneously, we launched the PFF Patient Registry and were thrilled to announce in March that we began enrolling patients. The PFF Patient Registry collects and stores clinical data, biological samples and high-resolution CT scans of patients with all types of PF. This combination of data from so many patients, including those with less-studied forms of PF, will have an enormous impact on future research.

What are your thoughts on the current state of idiopathic pulmonary fibrosis research?

 I’m very encouraged about the way we’re moving forward to assist patients, and the collaborative research that’s being developed. The momentum we’re achieving with two approved therapies for idiopathic pulmonary fibrosis (IPF) has further stimulated the field, motivated researchers, physicians and patients alike. The Pulmonary Fibrosis Foundation’s PFF Care Center Network and the PFF Patient Registry enhances access for patients who wish to participate in research and ensures that they are able to do so in a safe, secure environment. The PFF has developed a network of 40 CCN sites across the country. We hope that closer and more accessible care and an engaged and collaborative medical community will ultimately result in more quickly delivered, expert and comprehensive treatment for patients with PF.

 The PFF recently launched a national registry for pulmonary fibrosis patients — what does this mean for future research?

The PFF Patient Registry is an important, comprehensive research tool available to help us in our fight against PF. The Registry is a database of de-identified (made anonymous) medical information, collected at participating CCN sites and gathered from at least 2,000 people living with PF. Together, the CCN and Registry will become an unparalleled resource for future research focused on developing treatments for PF.

 Can you tell us more about the PFF Care Center Network and how it might benefit members of PatientsLikeMe’s IPF community?

The PFF Care Center Network (CCN) is a consortium of academic medical centers and community-based clinics with expertise in caring for patients with PF and a commitment to improving the lives of those with the disease by providing the highest quality care. In addition, CCN sites offer numerous support and educational opportunities for patients and their families including resources and medical expertise for local support groups, PFF educational materials and an annual educational event.

September is Global Pulmonary Fibrosis Awareness Month and we encourage the members of the PatientsLikeMe IPF community to spread the message to family, friends, healthcare professionals, colleagues, neighbors, community leaders and others. To learn more and get involved, visit our website and download our online toolbox.

The opportunity to serve as CMO really is a unique chance to make a valuable contribution to this field and improve the lives of many individuals. I am hopeful that the PF research community will be successful in identifying treatment(s), and eventually a cure.

From your perspective, what is the PatientsLikeMe / PFF partnership all about?

Through this partnership, the PFF is able to offer the unique tools that PatientsLikeMe provides through its website to the PF community. The Foundation is looking forward to providing even greater patient engagement and improved outcomes thanks to this collaboration.


Overcoming Multiple Sclerosis: Member Casper opens up about his MS journey

Posted September 19th, 2016 by

We recently got to know Casper (casper80), a member of the MS community who’s been living with his condition for nearly a decade. Along with tracking his health on PatientsLikeMe, Casper follows the “Overcoming Multiple Sclerosis Recovery Program” (OMS), founded by Professor George Jelinek of the University of Melbourne over 15 years ago.

The program focuses on lifestyle changes — things like diet, exercise, and meditation — that can help MS patients feel better and healthier in their day-to-day lives. We wanted to get Casper’s thoughts on what OMS is all about, and whether it’s helped him manage his health. Below, see what he has to say about his journey with MS (and OMS) and his experience on PatientsLikeMe: “It ensures I do not feel alone.”  

Tell us a little bit about yourself. What was life like before your diagnosis with MS? 

Life was fun, I had lots of friends and was enjoying life, no worries! I mostly enjoyed walking in the countryside, cooking and eating with friends. I live in the UK, and my family are all in Sweden (I am half English, half Swedish).

We hear from many PatientsLikeMe members living with MS that finding a diagnosis can sometimes be challenging. What was your MS diagnosis experience like? 

In early 2006, a random tingling in my legs appeared as I was waiting to cross a road, and did not go away. Occasionally, I would fall over when walking, or accidentally go to the toilet in my pants. I was very confused about what was happening to me. After a few months, my NHS doctor referred me to a consultant who said it could be the first sign of MS. He said I could get tested, but if it was MS there is no treatment. So I chose to not be tested.

Since MS, how has life changed? How have you, as some members say, adjusted to your “new normal”?  

It has taken some time, but I have adjusted to my “new normal.” My wife, family and friends also adjust when I am with them. I make sure I plan any activities in advance, pack a change of clothes just in case, go to the loo before I go out, plan routes, pack my own food. I have occasional challenges, but I am now happy again.

On your PatientsLikeMe profile, you mention that for the past three years you’ve been following a program called “Overcoming Multiple Sclerosis”(OMS), founded by Professor George Jelinek, Head of the Neuroepidemiology Unit (NEU) within the Melbourne School of Population and Global Health at The University of Melbourne. How does this program work? How has it changed the way you manage your MS? 

The OMS program has three core parts. First, I adjusted my diet to reduce my daily saturated fat consumption to 10g or less. It’s a vegan, whole food diet plus fish and Vitamin D.  I also exercise for half an hour, five times a week. And finally, I meditate for 30 minutes every day. I started slowly with a few minutes a day, gradually building up to 30. Now I generally do my 30 minutes when I need to rest, or during my train commute to work. Mindful meditation now goes quickly, it resets my body and I feel great after!

What can you do now that you couldn’t do before? What are some challenges that remain?

Mental – I can smile honestly. A few years ago I was scared and confused about what was happening …my slow but steady loss of ability and independence. I lost hope and found myself in a dark place. Nowadays, since following OMS, I can enjoy life, be optimistic and look forward to the future. I can make friends and family happy. People often tell me they are inspired by my positivity.

Challenges – occasionally I am still overwhelmed by MS and how it can affect everything the body and brain does, but I have found this usually means I have not had enough sleep!

Physical – I can walk further, more strongly. From 2006-2014 my walking slowly deteriorated until I lost confidence, was constantly using a walking stick and avoided going out. OMS gave me the confidence to exercise, build strength and try walking without my walking stick. Astonishingly, it eventually worked! I still use my walking stick sometimes, and if I have a day of exceptional long walking or physical effort I may use a wheelchair the next day (but these are very rare occasions). On a good day I will fold the walking stick and put in my rucksack. On a really good day I will leave home without my walking stick at all!

Challenges – I definitely still have physical limitations. I am sometimes frustrated that I struggle to carry a shopping bag and cannot run, but I keep practicing … it will come one day!

Toilet – I have more control and confidence than I have had for years. That is in part from experience and better management, but fundamentally things work better than they used to.

Challenges – Accidents can happen if I have not taken precautions, but this is very rare.

Neuropathic pain – 18 months ago I would wake up every night, literally screaming from pain in my left arm. My neuro prescribed Amitriptylene , which stopped this neuropathic pain. OMS has given me the confidence to carefully reduce the dose. I have not taken any for 13 months now and have no pain.

Brain fog – My brain is generally clear, and I have more confidence in it.

Challenges – Remembering to take things slow.

Diet – I am enjoying varied, delicious meals every day. My ability to taste is much better since following OMS…I can even recognize the difference between rice cakes!

Challenges – going to a restaurant used to be a challenge, but I have found restaurant staff and chefs are very happy to help if I ask them to make changes to the meals to be OMS-friendly.

Friends – I have made loads of friends who have MS through OMS. We are all helping each other. In a funny way, since finding OMS, I am actually happy because of MS.

Challenges – Time!

It looks like you’ve reported taking Baclofen on your PatientsLikeMe profile. How has the combination of taking a prescribed treatment along with following the Overcoming MS program holistically impacted your health outcomes?

I have had Secondary Progressive MS (SPMS) since the beginning of my MS nearly 10 years ago. There is no medicine for SPMS, just Baclofen to reduce muscle spasms.

My neuro told me to take Baclofen as/when I need, so I don’t have a set amount. I am quite relaxed with it but try to take as little as possible — these days I typically take 10-40mg/day. I went through a phase of not wanting to take Baclofen, but that simply resulted in me shaking more, so it was visibly apparent that I need it!

18 months ago I took Amitriptylene to reduce neuropathic pain, which worked and it was amazing, but I reduced that and eventually stopped completely soon after I went on an OMS retreat.

OMS has helped me understand that medicine is fantastic when it is needed, but you don’t necessarily have to use the medicine forever. (Of course discuss with your doctor).

OMS has given me a way to help myself, without waiting for SPMS medicine*. So whilst I am ready to accept medicine, I do not rely on it. Baclofen reduces my spasms — an important, but limited function. OMS diet, exercise and meditation makes me feel healthy, proactive and positive and enjoy life. Another great thing about OMS is that it also gives my family and friends hope, because they can see me being healthy and happy. I feel like I can overcome the challenges of MS!

*I am actually also on the MS-SMART trial, taking a small dose of medicine/placebo.

Other than this program, what else do you do to manage your MS? How has regularly tracking your symptoms on PatientsLikeMe helped? 

Tracking my symptoms on PatientsLikeMe has been great to see how I have improved over time. It was great when I showed my wife my PatientsLikeMe graphs and she saw my entries were honest (she remembers the bad days I had in the past, so she knew I was completing it truthfully). She was really happy to see my improvement.

The PatientsLikeMe network is fantastic, and I have been lucky to receive some good advice from others in the network. Occasionally I am even able to help with someone else’s question. It feels so nice when someone reads my post and ‘likes’ them. MS can be lonely, but the PatientsLikeMe network connects me with others who know MS from the inside — it ensures I do not feel alone.

What’s your best piece of advice for other MS patients? 

Have hope. Follow OMS —it is not an instant fix but the worst that can happen from OMS is that you eat a healthy diet and make friends!


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Redefining Patient Partnerships: Looking back on the 2015-2016 Team of Advisors

Posted September 15th, 2016 by

It’s been quite a year for the 20152016 Team of Advisors. This year’s team was tasked with bringing the patient voice to a central issue in healthcare: how to redefine patient partnerships.

Over the past several months, they’ve worked together to rethink what it means for patients to be partners and establish new ways for the healthcare industry to deliver better care.

The team introduced the Partnership Principles, outlining ways to make the most of your relationships with the many people you encounter in your health journey — from medical students to clinical trial coordinators. And through personal essays and interviews, each shared real-world examples of how they use these principles in their own lives.

As their term comes to an end, we wanted to share a recap of everything they’ve done. Hover over the image below and click on each member to check out what patient partnership means to them:



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