“We have become 24/7 creatures in a 24/7 society”: an interview on sleep with Fred W. Turek, Ph.D.

Posted May 20th, 2015 by

Dr. Fred Turek is Director of the Center for Sleep and Circadian Biology at Northwestern University. He holds a BS in biology from Michigan State University and a PhD in biology from Stanford University.

Dr.Turek’s current research focuses on the genetics of the circadian clock system, the effects of advanced age on behavioral and endocrine rhythms, the links between sleep, circadian rhythms and energy metabolism, and the role of melatonin in modulating sleep and circadian rhythms.

Said another way, he’s the expert on all things sleep-related.

Dr. Turek, during your lecture in Chicago about circadian rhythms and sleep, you talked about how modern life ‘battles’ ancient drives and Mother Nature. Could you explain more about that?
Yes, the ancient drives refer to the fact that we evolved on this planet for millions of years with one dominant feature of the environment: the relentless diurnal or 24-hour change in the light/ dark (LD) cycle, which is due to the rotation of the Earth on its axis.

This results in most of the Earth facing the sun and its light and warmth at one time of day, and later, that same part of the Earth is in dark and colder. Like all other living organisms, we evolved internal biological clocks, which have a period of “about” 24 hours (the internal clock has a circadian period that is about 23-25 hours in length). This internal clock is synchronized to the 24-hour external day night cycle, and until Edison came along about 125 years ago, the human internal clock was in lock step with the LD cycle. We were awake and active during the light/day and asleep and generally inactive during the dark/night.

However, over the last century, we have become 24/7 creatures in a 24/7 society, and we are often not paying attention to signals from our internal clock. Indeed, we are doing battle, if you will, with our internal 24-hour biological nature.

You’ve mentioned it was discovered that the daily rhythm of melatonin could influence other rhythms in animals. How has the research evolved since then?
I would say that research into the role of melatonin in regulating circadian rhythms, particularly in mammals, was slow, but has picked up speed over the last decade. While we still do not understand the overall function of the robust 24-hour melatonin rhythm (melatonin levels are low during the day and high during the night in all species, including humans), it appears to act as a mild hypnotic, at least in humans. Perhaps more importantly, it appears to act as a circadian organizer that links other 24-hour physiological and behavioral rhythms to one another.

In that Chicago lecture, you said, “When the clock stops ticking, metabolic syndrome explodes.” Can you share more about that?
That clever title came from Dr. Bart Staels in a short opinion piece he wrote for Nature soon after we published a paper in Science (2005). The paper demonstrated that animals carrying two copies of a mutated core molecular circadian gene (called Clock) can lead to the loss of all circadian rhythms, as well as increased weight and signs of the human metabolic syndrome: increased visceral obesity, insulin resistance and hypertension.

You make the point that, while the master circadian clock is located in the hypothalamus of the brain, 10-30% of the genes throughout the entire body are under circadian control. What does that mean in terms of how the “clock” affects health and disease?
Let me preface the answer to that question with a little background: Up until 10-15 years ago, researchers in the field thought a master circadian clock regulating all of our 24-hour rhythms was located in the hypothalamus, and that few other areas of the brain or peripheral tissues were capable of generating their own circadian rhythms.

With the discovery of many of the genes and their protein products that make up the molecular 24-hour clock came the surprising discovery that the molecular clock machinery was actually in all the cells, tissues and organs of the body. Equally surprising were recent discoveries indicating that this cellular circadian clock is regulating the timing over 24 hours of somewhere between 10-30% (and perhaps up to 50%) of all the expressed genes in a particular tissue or organ.

We call these genes “clock controlled genes.” What happens if that clock machinery breaks down, say in a disease state or with advanced age, in a particular tissue or organ? That is a question that we and many other laboratories are trying to answer right now. Humans, as in all animals, are not only spatially organized, we are also “temporally organized,” and a breakdown of that temporal organization, maybe only in a particular organ (lung, liver or pancreas, for example), could lead to disease in that particular tissue, even if all the other parts of the body have clocks running normally.

At one point in your lecture you went as far as to say, “I think insomnia is causing depression.” Could you elaborate on that?
I used such a direct statement since for years the importance of insomnia for causing or contributing to depression has been on the back burner of thinking in the field – with the dominant thinking being that depression causes insomnia. When I first wrote that statement, I was trying to be provocative, but in reality I believe it is likely that insomnia may be a contributing cause to at least some forms of depression, as well as perhaps increasing the severity of the symptoms of depression.

Many PatientsLikeMe members are living with conditions that may be impacted by sleep problems. Or on the flip side, their conditions might be impacting their sleep, right?
Absolutely: It is a two-way street. It is now clear that many, many mental and physical disorders are associated with poor sleep. Of course, there is the cause and effect or rather the chicken or the egg question: Which came first? In one sense, I am less interested in the answer to that question than I am in the question: If I treat poor sleep or insomnia in someone with a given condition, will I have a positive benefit for the treatment, prevention or even cure for the condition?

So, then, do you see a connection between the sleep we get and the conditions we live with?
Yes, PatientsLikeMe members should treat obtaining adequate sleep as a top priority in their lives – do not “cheat” on sleep. And if you are having trouble sleeping, perhaps due to your condition, tell your doctor about your sleep problem, and seek ways to remove that problem from your life.

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“In my own words” – PatientsLikeMe member Edward shares about living with schizoaffective disorder

Posted May 19th, 2015 by

Meet Edward, a member of the PatientsLikeMe mental health community. He’s been living with schizoaffective disorder since the late 1970s, and over the past 35 years, he’s experienced many symptoms, everything from paranoia and euphoria to insomnia and deep depression. Below, he uses his own words to take you on a journey through his life with schizoaffective disorder, including a detailed account of what happened when he stopped taking his medications and how he has learned to love God through loving others.

How it all began:
In my early twenty’s in 1977, I was doing GREAT in college, double majoring in Mathematics and Electrical Electronic Engineering and in the top 1% of my class when I started having problems with mental illness. My first symptom was an intense mental anguish as if something broke inside of my head. Then my sleep started to suffer and I would fall asleep in my college classes, which was not at all like me. Then I started having strong mood swings and I became very delusional. I experienced all of this without the use of any drugs or alcohol; in fact I have never used any street drugs or alcohol. Life became HELL and I tried suicide. My parents then put me in a psychiatric hospital, where I stayed for about a year.

What schizoaffective disorder feels like:
When not on any antipsychotic medications, I feel like; others could hear my thoughts (broadcasting), that I could hear other people’s thoughts (mind reading), that I could communicate by thought with others without speaking a word (telepathic communication), not only could I communicate with other people in this way but I could communicate with other things as if they had human like qualities (anthropomorphic telepathic communication), believing that I am super important to the world (grandiose thinking), that others were out to kill me (paranoia), and I would become very delusional. But, now after taking the antipsychotic medications for some time, not only do I not believe that these things (powers) were never true for me, I also believe that no one else has these powers. Maybe some people may have others out to kill them, but this is not true for me. Also, for over 35 years (1977 – 2013) I believed that God would talk to me personally and would give me personal instructions, but now, I don’t believe this is/was ever true.

On top of having psychotic episodes, my mood has fluctuated from being euphoria, extremely joyful, super happy, with very little sleep, feeling like I didn’t need to sleep, etc. to suicidal lows, dysphoria, deep dark depression, and sleeping a lot with not being able to get out of bed, etc. My mood swings greatly in duration and intensity for reasons I am not fully aware of.

My quality of sleep is very poor. When I lay down in bed to go to sleep, my body/mind tortures me so much that if I haven’t gone to sleep within about five minutes I get up out of bed to relieve the torture like sensations. The torture sensations might be; restless legs, a general restlessness of my body or mind, a sensation in the back of my throat, an itch, or any thing that my mind can not stop focusing on. Once I have gone to sleep, I only sleep for about an hour before I awake. Once awake I go through all of the problems of falling back to sleep again. The sleep I do get is not refreshing. My mood and sleep go hand in hand, when my sleep is bad, my mood swings are bad and when my mood swings are bad, my sleep is bad and vise-a-versa. I have had a recent improvement my mood/sleep problem. It may be due to my new medication, Latuda that I am taking. Only time will tell if Latuda will continue to help.

What happened when I tried to stop taking my meds:
I stopped taking all my medications because I wanted to see if they were doing anything for me. Everyone told me that this was a bad idea, but I did it anyways.

As time progressed I could tell that my wife, Audrey, wanted to confess something to me, but was scared that I would not be able to handle it. I could also tell that Audrey talked to my counselor about this, and that my counselor agreed with her not to tell me. They were keeping something a secret from me. We danced around the issue, as if there was a white elephant in the room that no one was willing to talk about.

I figured that Audrey was having an affair with the senior pastor of a local mega church that she belongs to. It appeared to me that Audrey was willing to break off the affair and go public with it, but the pastor was not. To keep it from going public, I figured that the pastor hired a hit man to kill me. The more I thought about it, the more I was sure of it.

One day after Audrey left for work, I panicked. I started running. The first thing I did was try to get a hotel room without showing ID. However, all the hotels that I tried required ID. The way the hotel staff acted made me all the more sure that the pastor was getting help in finding where I was. At this point, I went into a Jack in the Box to get something to eat, and I could tell by the way people were acting that they had received the reverse 911 call on me. I figured the senior pastor that was having an affair with my wife knew that I knew about the affair and that I was running, so he convinced the police that I was either a danger to myself or to others, and that they should put out a reverse 911 call to find me.

I quickly left the Jack in the Box and got back in my car. I drove to a Rite Aid store and bought some bottled water, because I was planning to hide in the desert. The employees at the Rite Aid seemed to be acting strange around me, as if they, too, received the reverse 911 call on me. I quickly got in my car and drove into the desert, trying to find a safe place, but I saw a helicopter in the distance, and I knew I was not safe there either. I got on the freeway and headed north.

I had not been sleeping well for weeks and was getting very tired. Having a bottle of 200-milligram caffeine tablets with me, I took one. It helped only a little. I was also taking them to help me feel better, and I already had a lot of caffeine in my system. After driving for about fifteen minutes, I felt sleepy again, so I took another caffeine tablet. This sequence of events continued. I was taking a caffeine tablet about every five to fifteen minutes.

After driving for about two hours, I was scared that I might be a danger to myself or, worse, to someone else, because I could easy fall asleep behind the wheel. I pulled off the freeway into the parking lot of an old run down hotel. I figured that these people would be willing to hide me.

I booked a room, even though I had to show my ID. They too appeared to be acting strange. I figured that my picture must be on TV, so that people could be on the lookout for me. Everywhere I went people were looking at me funny. At the hotel I tried to lie down on the bed to get some rest, but I could not rest. I was wired. I got back in my car and drove north again.

After driving for about another hour, I came to the conclusion that I could not hide, and that they would eventually find me and kill me no matter where I went, so I stopped running. I called Audrey and told her I was coming home. Still very tired, I got back in my car and took another caffeine tablet or two.

I do not remember if my son called me or if I called him, but my son and I talked. I told him that I thought his mother was having an affair. Talking to him did help me stay awake while driving. After talking to my son, I called a friend to have him talk to me to help me stay awake. I was still taking a caffeine tablet about every five to fifteen minutes.

Half a bottle of caffeine tablets later, and with the help of everyone, I finally made it home that night. My wife and I got ready for bed, but I could not get any rest.

I got up and started playing on my computer. This was no help, for I started to worry about the Internet crashing, which would cause havoc to our society. Not only was I worried that the Internet could fail, but I believed that I could make it crash, if I wished. This really bothered me a lot.

The way I figured it was, if I did not make it crash, myself, it would someday crash by itself. The more I thought about this, the more I was sure of it. The problem was that if it crashed later we would be worse off and our society would not be able to recover.

I figured that the Internet could not handle human emotions, so I decide to make it crash that night by causing it to be jealous of my other computer—that was not connected to the Internet. I told my computer that was connected to the internet, that I loved my other computer more.

In the morning, Audrey took me to the emergency room at a hospital where there was a behavioral health unit.

Now, I was really afraid of just about everything and everybody. I thought that the internet was out to get me. I believed that the FBI, CIA, and Homeland Security were called in because I was viewed as a national threat. I also believed that the hospital needed time to get agents into the locked ward to act as patients.

After spending most of the day in the emergency room, I was all the more sure that these things were true. I thought they would put me in the behavioral health locked ward, but they did not. Instead, they put me on the surgical floor.

Now, I really believed something was up. Why would they do that? This scared me even more.

On the surgical floor, they had a nurse sit by my bed. I thought she was working for the government to find out if I was a national threat or not. I told her everything about my relationship with my computers and how I caused the Internet to crash. At this point, I thought the Internet had already crashed and it was all over the news, because the hospital staff would not let me watch TV.

To make matters worse, I was craving sex, badly. I was hoping the nurse would be willing to do something with me, if Audrey gave her okay. It seemed to me that Audrey did not want to have sex with me, and she might be willing to let me play with someone else. So, if she was willing, I was willing. But this never happened.

I was scared out of my wits. I wanted the hospital staff to put me in lock-up. Believe it or not, I felt more comfortable in the lock-up ward than I did on the surgical floor.

Later they put me in the mental health lock ward and placed me on a three-day hold, and then on a two-week hold. They stated that I overdosed on caffeine, that I was a danger to myself and others, and that I could not care for myself.

At first I refused to take the medication they wanted me to take, but later I did take it and I got better.

Now I can see that I was very delusional.

Where I’m at today:
My life has been full of ups and downs, twists and turns, which have taught me an important fact, keep the main thing the main thing, which is to love God with everything I got by loving others as I would have them love me with forgiveness, compassion, endurance, patience, mercy, grace, charity, tenderness, strength, wisdom, kindness, and with all that causes good to happen. The way I see God is He is more of a Spirit than a being, like Santa Clause is more of the spirit of giving at Christmas time than a actual being. Different psychiatrists have given me different diagnoses and prescribed different medications at different times in my life. When I am not suffering with my symptoms of mental illness, I enjoy working with my robot, studying and doing math, writing books, writing computer programs, and thinking about God stuff. If you have any questions either about myself or my fight with this illness, please ask me.

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Schizophrenia: Living well and working towards a cure

Posted May 18th, 2015 by

Today marks the start of Schizophrenia Awareness Week, and what better way to begin than with the story of an inspiring woman who is living with schizophrenia and advocating for better treatments.

Dr. Elyn Saks was diagnosed with schizophrenia as a college student. At first she struggled with her diagnosis, and it took a while before she found treatments that worked for her. Ultimately she excelled in her studies and became the Chair Professor of Law at USC’s Gould School of Law. She even won a MacArthur Genius Grant for her work in mental health research and advocacy. Recently, she sat down with Brian Staglin of Brain Waves, a video program sponsored by the International Mental Health Research Organization (IMHRO). Dr. Saks talked about her experience with schizophrenia and her work for the empathic treatment of people with mental illness.

Dr. Saks’ story is just one of many. Schizophrenia affects 2.5 million adults in the United States alone, and thousands more have not been officially diagnosed.1 Schizophrenia can be difficult to recognize, as some of the symptoms, like mood swings, impulsive behavior and hallucinations (seeing or hearing things that aren’t there), are common in other mental health conditions. Schizophrenia may also be mistaken for depression, since some people with schizophrenia have a flat mood and slowed speech, or they withdraw from friends and family.2

Stay tuned for a special “In My Own Words” entry from a PatientsLikeMe member.  And if you’ve been diagnosed with schizophrenia, join more than 700 others in the online community.

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PatientsLikeMe Appoints Jason Johnson Executive Vice President and Head of R&D

Posted May 18th, 2015 by

CAMBRIDGE, MA, May 18, 2015—PatientsLikeMe today announced it has appointed Jason Johnson, PhD, as Executive Vice President and head of research and development (R&D). Johnson leads the company’s research, data science, and informatics teams, which focus on analyzing and merging patient-reported and other data types to develop models of disease progression and generate new insights about disease, treatments, and health. Johnson reports directly to CEO Martin Coulter.

“Jason comes to us at a time when the industry is putting patients at the center of healthcare, and using more patient-reported data to guide business and operational decisions,” said Coulter. “Our research and informatics teams bring the data to life by extracting insight and meaning about the patient experience, and helping our partners see which medicines and therapeutic approaches will benefit patients the most. The combination of Jason’s leadership and our scientifically-validated data will be a powerful source of insight to guide discovery, development, and treatment decision making.”

A renowned computational biologist and information science strategist, Johnson comes to PatientsLikeMe after spending 14 years at Merck, most recently as Associate Vice President for Scientific Informatics. In this role, Jason helped build Merck’s informatics and analytics capabilities and was responsible for applied math and modeling, scientific computing and research software engineering. Johnson held various leadership roles during his tenure at Merck within R&D and information technology (IT), and led teams responsible for early clinical development and discovery research IT, computational biology, molecular profiling, and genomics research. Prior to joining Merck, Jason worked at Rosetta Inpharmatics, a biotechnology company in Seattle, and at Pfizer.

“PatientsLikeMe’s ability to bring patients together to share data and insights can transform the way healthcare is practiced and substantially increase value to patients,“ said Johnson. “I’m excited to be working on healthcare informatics from the perspective of the patient. I believe that amassing and analyzing relevant health and medical information from many people with similar experiences and patterns of data can deliver research insights that improve healthcare decision making and patient health.”

Johnson is the author of more than 35 peer-reviewed research publications. He holds bachelor’s degrees in physics and philosophy from Stanford University, a master’s degree in physics from the University of Cambridge in the United Kingdom, and a PhD in biophysics from Harvard University.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) 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 325,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
(781) 492-1039
mcdelogne@patientslikeme.com


Putting on purple for lupus awareness

Posted May 15th, 2015 by

If you’ve got something purple to wear, today’s your day – the Lupus Foundation of America (LFA) is encouraging everyone to “Put on Purple” to help raise awareness for lupus.

Lupus is an autoimmune disorder that affects millions of people worldwide, and the majority of these patients are women. Common symptoms include extreme fatigue, swollen joints, headaches, butterfly rashes and more. Check out these infographics from the LFA to learn more:

 

 

 

Today, the PatientsLikeMe Team is putting on purple to help shine a spotlight on lupus. Share your own photos on social media using the #POPGA or #PutOnPurple hashtags.

And if you are living with lupus, don’t hesitate to reach out to the community on PatientsLikeMe – over 7,000 people are sharing their experiences to help everyone solve the mystery of lupus.

 

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Getting to know our Team of Advisors – Amy

Posted May 13th, 2015 by

We’re been introducing the PatientsLikeMe Team of Advisors on the blog over the past 6 months, and today, we’re happy to announce Amy, a member living with a rare genetic disease called Fabry. Below, she shares about the importance of being aware of patients as individuals, and how she’s learned to live (and thrive!) with Fabry.

About Amy (aka meridiansb):
Amy is currently on the Patient Advisory Board for Amicus Therapeutics where she serves as a patient voice for researchers as they work to develop a new drug for Fabry Disease. Amy is a great champion to have in your corner, with a self-reported ‘wicked sense of humor’, and passion for connecting others to the right resources and information. She has experience advocating for others as a medical social worker, and believes in the importance of getting to know a patient population, writing materials that they can relate to, and understanding how managing their condition fits into their life as a whole. Her tip for researchers and healthcare professionals: “Remember, not everyone fits into neat categories. Those that fall outside of what’s typical can be an invaluable resource when researching a particular condition.”

Amy on patient centeredness:
“Patient-centeredness means that above all else, you have an awareness of the patient as a unique human being, because diseases don’t exist on their own, they happen to people. It means not always doing what is easiest for the doctor or researcher, but what is appropriate for the individual. It means being open-minded and adaptable, not everyone fits in a neat little box. It means not treating people like they are stupid just because they don’t have a medical degree. People know their own bodies, and live with their condition day in and day out and if doctors and researchers don’t listen they can miss crucial information that can help many. These days people have access to a lot of information, and they want to be treated like partners in their care not problems to be solved seen only through the filter of illness, and certainly not like a nuisance because they have an opinion about things.”

Amy on the Team of Advisors:
“Being a member of the Team of Advisors at PLM has been an incredible experience. Having had to quit school and work due to illness, I felt at times that everything I had achieved was for nothing and that I had nothing to offer to this world, which was beyond discouraging. Being a part of the Team of Advisors has given me a meaningful way to use my knowledge and experience to help shape the way physicians and researchers interact with patients. The first time I sat in a room with the team and the wonderful people at PLM I felt a sense of hopefulness that it was all happening for a reason. It taught me that even when your path is diverted by something out of your control, you can find a new path; there is good to be found in every circumstance even when you can’t see it right away. I feel lucky to have served on the Team of Advisors with such a diverse and passionate group of people.”

Amy on having a rare disease:
“Having any illness can be confusing and overwhelming, but when 95% of the doctors you see haven’t even heard of your disease, it can be exasperating and daunting. Having a rare genetic disease, Fabry, has presented me with an even greater need to advocate for myself and others with my same condition. I’m lucky enough to have a background working in hospitals as a medical social worker, so I am no stranger to advocacy and I have no problem speaking up; but this isn’t the case for everyone. Upon my mom’s diagnosis, and then my own, I quickly jumped onto message boards and support groups for Fabry, only to find there are many more questions than answers. I am lucky to have access to a geneticist that is familiar with Fabry, but most people don’t. Because our disease is so rare, many people are hundreds of miles from anyone else with Fabry. In person support groups aren’t really an option, so the internet and learning from each other on social media is crucial. I spend a lot of my time gathering questions from other people with Fabry and working them into my appointments, then reporting back to the message boards. Others do the same, and together we find our way to new tools to manage our lives with Fabry, new things to ask our doctor’s about, and new resources to call upon in trying to figure out this disease. In addition, I try to support others in being assertive with their doctors. I think we have been deeply conditioned in our society to respect authority and education, which is not inherently bad, but it can create an obstacle to honest communication with our health care professionals. It can be really intimidating! You try telling a person with 8-12 years of medical education and years of practice experience that you would like to teach them about a medical condition they don’t already know about! Some egos are better equipped than others to handle the learning curve required in having me as a patient. I ask a lot of questions and I expect good information in return. I always come from a respectful place, as I don’t expect every physician to know about Fabry, but I expect them to be open to learning about it. Some are more than willing and some aren’t and I’ve had to “break up” with my fair share of doctors who weren’t willing. But really, if they don’t care to continue growing as a provider, then I don’t really want them as my doctor anyway. So really, you have nothing to lose by setting high standards for your providers. But you have a lot to lose by remaining in the care of a doctor that wants to treat you like everyone else. You are not just like everyone else! You can miss out on valuable information that can seriously affect your care. So speak up, be respectful, but be assertive. And if you don’t feel that your needs are being met, cut your losses and find someone that does. You are the only one that can make those decisions for yourself! And if you need some moral support, just message me!”

More about the 2014 Team of Advisors
They’re a group of 14 PatientsLikeMe members who will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and over the next 12 months, will give feedback to our own PatientsLikeMe Research Team. They’ll also be working together to develop and publish a guide that outlines standards for how researchers can meaningfully engage with patients throughout the entire research process.

So where did we find our 2014 Team? We posted an open call for applications in the forums, and were blown away by the response! The Team includes veterans, nurses, social workers, academics and advocates; all living with different conditions.

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Coming together for immunological and neurological health in May

Posted May 12th, 2015 by

If you follow PatientsLikeMe on social media, you might have seen a few “Pop Quiz Tuesday” posts. Today, here’s a special pop quiz – what do fibromyalgia, myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) have in common?

The answer is that they are classified as Chronic Immunological and Neurological Diseases (CINDs). And since 1992, every May 12th has been recognized as International Awareness Day for CINDs. Today, in conjunction with Fibromyalgia Awareness Month, it’s time to recognize everyone living with a CIND.

While fibromyalgia and ME/CFS are both CINDs, each is a little different. Check out some quick facts about each condition:

Fibromyalgia1

  • Affects 5 million Americans over the age of 18, and the majority are women
  • The cause of fibromyalgia is unknown
  • Common symptoms include insomnia, headaches, pain and tingling in the hands and feet

ME/CFS2

  • Affects between 836,000 to 2.5 million Americans
  • The large majority of people living with ME/CFS have not been diagnosed
  • There are five main symptoms of ME/CFS, as opposed to the more general symptoms of fibromyalgia:
    • Profound fatigue that impairs carrying out normal daily activities
    • Unrefreshing sleep
    • Cognitive impairment
    • Symptoms that worsen when a person stands up
    • Symptoms that worsen after exerting any type (emotional, physical) effort

But sometimes, living with a CIND can be hard to describe. Check out this short video to get an idea of the invisible symptoms of ME/CFS.

Today, you can share your support for fibromyalgia and ME/CFS on social media through the #May12th, #Fibromyalgia and #MECFS hashtags. If you have a chance, you should incorporate the color blue into your activities, anything from changing the background on your Facebook to shining a blue light on your house at nighttime.

And if you’ve been diagnosed with a CIND, join the community at PatientsLikeMe. The fibromyalgia community is one of the largest on the site – over 59,000 people are sharing their experiences, along with more than 11,000 living with ME/CFS.

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1 http://www.niams.nih.gov/health_info/fibromyalgia/fibromyalgia_ff.asp

2 https://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf


PatientsLikeMeInMotion™ 2015: Celebrating 7 years of PatientsLikeMe members giving back to their communities and raising awareness

Posted May 11th, 2015 by

For those of you who don’t know, our PatientsLikeMeInMotion™ program has been running since 2009—how time flies! Join us in celebrating our 7th year with a recap of 2014, our biggest year so far!

Last year, we had the honor of supporting 2192 members across 32 states that participated in a range of events and had a lot of fun along the way! Some of the events included a motorcycle ride, a golf tournament, a MuckFest, a Halloween Run and Relay, and a Cake Sale to boot!

If you’re unfamiliar with how it works, check out our guidelines – we sponsor 3-star members (super health data donors) who form teams and fundraise with their local nonprofits. And these advocates receive a donation, free team t-shirts and more! Here’s what some members had to say:

“Advocacy is huge, because without voices out there speaking on our behalf, we would never get any funding or support.”

“It is thanks to these fundraisers that there are now therapeutic options for patients like us. When I was first diagnosed, there was NOOOOOOOOOOOOOOOOOOOTHING. While there is still no cure, we have evidence that research is making strides and there is greater reason to hope. I have always been so grateful for the generosity of the PLM program. I feel so fortunate every time my family and I can contribute, to the financing of research for the cure.”

Quick facts:

More than 2,100 members from 113 different teams raised close to $24,000 through the PatientsLikeMeInMotion™ program in 2014.

Events took place in 32 states:

And represented 28 disease communities:

Thanks to everyone who participated in 2014! If you’d like to join the program in 2015, here’s all you need to do:

  1. Join PatientsLikeMe (it’s free!)
  2. Get 3 stars (your profile is up-to-date)
  3. Submit your team details (within 3-4 weeks notice of the event, please!)

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PatientsLikeMe Names Michael Evers New Executive Vice President of Consumer and Technology Group

Posted May 11th, 2015 by

CAMBRIDGE, MA., May 11, 2015—PatientsLikeMe today announced it has named Michael Evers the head of its newly-formed consumer and technology group. In this role, Evers will focus on creating value for patients and directing the company’s marketing, engineering, user experience and design, product management, patient advocacy and government compliance teams. He reports directly to CEO Martin Coulter.

Evers joined PatientsLikeMe as Executive Vice President of Marketing in 2012. Since then he has tripled the company’s member base to 325,000 members and significantly increased engagement on the site. He has also developed and expanded the company’s marketing capability and created the strategy and infrastructure for a strong partner network that includes Walgreens, Aetna and numerous other organizations and nonprofits. The new role is a promotion and expands Evers’ responsibilities to include design and development of the company’s website, which is widely lauded as a leading resource for patients to track their health, connect with others and contribute health data for research.

“In the last three years, Michael has been instrumental in driving our member growth and business expansion. His leadership and deep consumer background will ensure that we continue to develop our company and services in ways that helps our members improve their health, and healthspan,” said Coulter.

Before joining PatientsLikeMe, Evers was President of BroadMap, a provider of industry-leading geographic data products. Evers’s geospatial industry experience started at TomTom in 2005, where he was the Global Vice President of Marketing and Business Development for the company’s Tele Atlas business unit. He has also held senior marketing positions at Motorola and AOL Time Warner.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) 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 325,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
(781) 492-1039
mcdelogne@patientslikeme.com


Compassion for all: Adrianne shares how friendship grew from the life-altering Boston Marathon Bombing

Posted May 8th, 2015 by

From our partners and friends at the Schwartz Center for Compassionate Healthcare.

In 2013, Adrianne joined the Schwartz Center in honoring the caregivers who saved her life after she was injured in the Boston Marathon Bombing, including a special thank you to Jeff Kalish, MD, of Boston Medical Center who performed her surgeries. Research shows that compassion is great medicine, enabling patients to thrive, caregivers to rediscover their passion for healing, and health systems to prosper – click below learn how Adrianne survived and is thriving because of compassionate care.


A bold choice to fight epilepsy

Posted May 6th, 2015 by

As originally seen on the Tampa General Hospital News Center website

It was scary enough for Letitia Browne-James’ parents to witness their child’s epileptic seizures. But they were also frightened when a doctor suggested brain surgery for their 12-year-old.

“My parents said ‘no way,’” Browne-James said. “It was a very scary thought.”

They tried medications, the first step for most of the more than three million U.S. epilepsy patients. But Letitia, like almost a third of patients with epilepsy, could not find a medication that worked. And so for more than 20 years, Letitia fought a losing battle against epileptic seizures that slowly eroded her quality of life.

Finally, at age 31 and desperate for a cure, Letitia took that final dramatic step: brain surgery. This is the story of her journey to become seizure-free.

For thousands of epilepsy patients, brain surgery can be the best option to end seizures. But for these patients with uncontrolled seizures, Browne-James’ experience is typical. Most who eventually have surgery wait 15 to 18 years after diagnosis.

Researchers estimate that well over 100,000 epilepsy patients are good candidates for surgery. But each year, only about 3,000 receive it.

“Surgery is the most dramatic thing you can do to treat epilepsy,” said Dr. Selim Benbadis, director of the Comprehensive Epilepsy Program at Tampa General and University of South Florida. “But these misconceptions exist. We see patients all the time who say, “Oh, my neurologist said, ‘Don’t do that. That’s a last resort before you die.’ “

For many patients, the risk of uncontrolled seizures is higher than surgery itself, Benbadis said. Two recent studies found most patients were seizure-free afterwards.

“If things aren’t working, there is a next step,” said Benbadis, also a professor of neurology at the USF Health Morsani College of Medicine. “Get to an epilepsy center, preferably Level IV, and see what’s causing your seizures and what your treatment options are.”

Patients who visit such a center may even discover they don’t have epilepsy.  Up to one-third of them are misdiagnosed.

***

Browne-James, who lives in Orlando, had her first seizure when she was six months old – and then not again until she was 10. She was diagnosed with epilepsy, an electrical disturbance in the brain that causes seizures. She tried one medication, then another.

But at least once a month, she would have a seizure.

She chafed against the limits that came with epilepsy. She wasn’t allowed to go swimming. Or play too far from home.

She feared having a seizure in school or in church, while she was acting or dancing on stage, or, as she got older, on a date. When she met her future husband, Jonah James, Jr., through mutual friends, she told him about the disease right away.

She worried about her wedding day.

“I prayed really hard, just asking God to allow me to let me make it through that day without having a seizure,” she said.

Her seizures gradually got worse, occurring at least once a week. Now a counselor, she worried about having a seizure in front of a client.

Browne-James wasn’t able to drive. She lost a tooth. She cut her knee so badly that it required stitches and left a sprawling scar. She lost count of the cuts and bruises and hospital visits, all caused by seizures she couldn’t remember.

She tried more medications, and grew increasingly frustrated. About three years ago, Browne-James joined a website that has an epilepsy forum and began to talk with other patients.

The website, called PatientsLikeMe, became her lifeline. It prompted her to find an Orlando neurologist who specializes in epilepsy, called an epileptologist. She learned about brain surgery. Her new doctor gave her the names of three hospitals in Florida where the surgery is performed.

When she called the first one, the doctor there said the hospital could perform her surgery. But he told her she would be better off with a center that performs the surgery more often. She said he recommended Dr. Fernando Vale, surgical director of Tampa General’s epilepsy program and vice chair of USF Health’s Department of Neurosurgery and Brain Repair. Tampa General is the busiest epilepsy surgery center in Florida.

***

Browne-James underwent an extensive evaluation to see whether surgery would help her.  Doctors like Benbadis can identify what part of the brain the seizures come from and evaluate whether it controls any essential cognitive functions.  They can also see which side of the brain is dominant.

“We need to educate patients and physicians more,” said Dr. Vale. “It’s still delicate surgery, don’t get me wrong, but people talk about surgery as scary, how it will disfigure them. And there are misconceptions among neurologists. We are trying to reduce these fears and reassure patients it’s a safe operation.”

The extensive neurological testing and use of two-inch long “keyhole” incisions can help reduce those fears, he said. As the day of the surgery grew closer, Browne-James wasn’t scared.

“Everyone thought I was crazy because I was very excited and counting down the days to brain surgery,” she said.

Dr. Vale removed a tiny piece of Browne-James’ brain, about the size of a sugar cube.  Browne-James marveled at how small the scar was.

She hasn’t had a seizure since. And her cognitive abilities are fine; she’s now working on  her PhD.

Since her surgery, Browne-James has become an outspoken patient advocate. She’s made a video for PatientsLikeMe and frequently speaks with patients and medical researchers about the need for patients to be informed about their care.

One of those patients was an 11-year-old girl.  The girl went on to have surgery and has been seizure-free since.

“She doesn’t have to grow up like I did,” Browne-James said. “Living with epilepsy and planning her life around it.”

For more information about the Comprehensive Epilepsy Program at Tampa General Hospital, contact vkelley@tgh.org or call (813) 844-4675.

Story by Lisa Greene, video and photos by Daniel Wallace, Tampa General News, Friday, April 17, 2015.

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What can you do to challenge ALS in May?

Posted May 4th, 2015 by

It’s been 23 years since the U.S. Congress first recognized May as ALS Awareness Month in 1992, and while progress towards new treatments has been slower than we’ve all hoped,  a lot has still happened since then. In 1995, Riluzole, the first treatment to alter the course of ALS, was approved by the FDA. In the 2000s, familial ALS was linked to 10 percent of cases, and new genes and mutations continue to be discovered every year.1 In 2006, the first-of-its-kind PatientsLikeMe ALS community, was launched, and now numbers over 7,400 strong. And just two short years later, those community members helped prove that lithium carbonate, a drug thought to affect ALS progression, was actually ineffective.

This May, it’s time to spread awareness for the history of ALS and share everything we’ve learned to encourage new research that can lead to better treatments.

In the United States, 5,600 people are diagnosed with ALS each year,2 which means that well over 100,000 have started their ALS journey since 1992. And in 1998, Stephen Heywood, the brother of our co-founders Ben and Jamie, was also diagnosed. They immediately went to work trying to find new ways to slow Stephen’s progression, and after 6 years of trial and error, they built PatientsLikeMe in 2004. If you don’t know their family’s story, watch Jamie’s TED Talk on the big idea his brother inspired.

So how can you get involved in ALS awareness this May? Here’s what some organizations are doing:

If you’ve been diagnosed with ALS and are looking to connect with a welcoming group of others like you, join the PatientsLikeMe community. More than 7,000 members are sharing about their experiences and helping one another navigate their health journeys.

Don’t forget to keep an eye out for more ALS awareness posts on the blog in May.

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1 http://www.alsa.org/research/about-als-research/genetics-of-als.html

2 http://www.alsa.org/about-als/facts-you-should-know.html


Making sure conferences are “Patients Included”

Posted May 1st, 2015 by

Picture this: you’re a medical professional and are about to open the doors to a conference you’ve spent years pulling together. You’ve booked your venue, have your sponsors lined up, got top headliners to give keynotes, picked your Twitter hashtag and have invited every industry pro to be a part of the event.

In walk the physicians; check. Allied health professionals; check. Pharmacists; check. Industry leaders, life science CEO’s and top researchers; check, check, check.

Notice anyone that’s missing? If medical conferences exist to create a network, to stimulate new collaborations, overturn redundant thinking, and to help attendees return to work reinvigorated, the conference that excludes patients misses hearing the most important voices in medicine.

But luckily for you, patients living with a variety of conditions aren’t just sitting on the sidelines anymore. They’re proactively participating in these conferences any way they can, even if that means going through the virtual window. They watch the hashtag, pose questions, say they wish the conference were live-streamed, and ask attendees to smuggle out knowledge they could use to improve their care or offer them hope. If they’re ignored or marginalized they take to the Twittersphere and let their displeasure be known.

“The slow boring of hard boards”
Over a decade ago the Outcome Measures in Rheumatology (OMERACT) began inviting patients to its meetings, initially as observers, later as participants and then finally as true co-producers. It was a long journey, and as patient research partner Maarten de Wit has described, not always easy for its patient members. However the team has documented the benefits of patient inclusion such as: “widening the research agenda; including patient relevant outcomes in core sets; enhancing patient reported instruments; changing the culture of OMERACT… identifying previously neglected outcome domains such as fatigue, sleep disturbances and flares which prompted collaborative working on new programmes of research.”

A new mechanism for change
On May 1st 2015, a group of volunteers hope to take patient inclusivity to the next level by releasing version 1.0 of a crowdsourced charter called #PatientsIncluded. It contains five clauses based on Lucien Englen’s astute observation that there are too many conferences lacking patients on the planning committee, on stage, and in the audience. Medical conferences that are certain they meet the criteria have the right to use the “Patients Included” logo, and we hope will rapidly come to realize the benefits that can accrue.

The charter is by no means a silver bullet – it is a tool to encourage conference organizers to think past tokenism, be ambitious in their striving to integrate, and to reward those who take the uncomfortable step to try something different. My hope is that a wellspring of advice, best practices, and strategies will emerge from conference organizers as they deal with issues of cost, inclusivity, managing tensions, and reflecting on the changes made. Patients will develop their own resources to help one another plan, influence, participate, and engage in what might well be an uncomfortable and unfamiliar environment themselves.

As a member of the 5-strong patient panel at this month’s International Forum on Safety and Quality, hosted by the BMJ, there was much to admire from the way patients were celebrated and invited to speak and chair sessions. It was also clear that the scientific advisory board is taking seriously the notion that patients are  experts in their own right with much to offer. However it’s clear too that advocating and just being physically present at a medical conference is hard and exhausting work.

I hope actors on both sides of the qualification fence will work to support one another and acknowledge that this is a journey. Mistakes will be made. Iterations will have to occur. The name itself, version 1.0, demands that we constantly realign  and have the confidence to continue forward. The reward for the future will be that of professionals and patient-experts joining forces to advance our collective understanding of illness, formulate new plans of attack, and forge new weapons in the fight against disease.

PatientsLikeMe member PaulWicks

 

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Throwback Thursday: Paul discusses what happens when trial participants realize they hold the power

Posted April 30th, 2015 by

Just about a year ago, PatientsLikeMe’s Paul Wicks, PhD, Vice President of Innovation, wrote a blog post about what happens when trial participants realize they hold the power in clinical trials. He began his early experiences with ALS patients and clinical trials, but then fast-forwarded to how PatientsLikeMe members have replicated a clinical trial, started sharing their data with leading researchers to debunk alternative “cures” for their disease and even started taking trials into their own hands. Read what else Paul had to say here.

And if you’re interested in learning more, click below to watch Paul talk about patients leading the direction of clinical research in an interview with BioMed Central:

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