Painsomnia | MyHealthTeams

By Eric Peacock, cofounder and CEO of MyHealthTeams

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Painsomnia: When pain causes insomnia

“It’s like sleeping on rough-edged rocks. My body is trying to kill me from the inside out. Night after night.”

Every morning we see post after post just like this one, made by thousands of people facing chronic diseases, who have joined one of our 29 different patient social networks. It’s an epidemic that doesn’t get as much attention as it should. When we take a closer look at conditions such as lupus, endometriosis, rheumatoid arthritis, spondyloarthritis, migraine, psoriasis, Parkinson’s, hemophilia and fibromyalgia, the inability to sleep is a top symptom impacting quality of life — with 45% to 85% of members dealing with insomnia and a majority citing pain as the primary reason for the inability to sleep. “Painsomnia” they call it.

The National Sleep Foundation estimates that chronic pain disturbs the slumber of one in five Americans at least a few nights each week. Bad enough on the surface, the insidious thing about painsomnia is the undertow-effect. People are pulled under by the compounding impact of sleep deprivation. Depression. Cognitive dysfunction. Worsening of other physical symptoms. Inability to complete necessary tasks at home and work. Strain on relationships. The vicious cycle repeats and intensifies.

Painsomnia is one of the most talked-about topics in peer-to-peer conversations within condition-specific social networks. People are struggling, and they’re seeking support from others who get it.





Overlooked Problem, Underestimated Impact
In research we completed in partnership with Bioverativ among members of MyHemophiliaTeam, people reported they are equally concerned about the depression they experience daily (65%) as they are about controlling bleeds. Digging into this a bit deeper, we found that 57% deal with pain so severe they find it hard to move comfortably and 71% say they can’t even escape the pain in their sleep. These issues are clearly linked, but healthcare providers and pharma companies too often overlook or underestimate the undertow effect of unchecked pain. In our study, 76% of respondents did not feel their pain is adequately addressed as part of their current treatment. That’s a problem as well as an opportunity.

There’s a real opportunity for biopharma companies to address unmet needs like this. The first order of business is to understand the real-world patient experience by exploring the symptoms that most impact quality of life. So many times, we see that the priorities of people living with a disease differ from the priorities of KOLs or the people working to treat it. The understanding that comes from an initiative such as our hemophilia study can help guide the approach providers and pharma co’s take to address unmet patient needs and better fight the undertow of an issue such as painsomnia.

The Innovation Imperative
Tackling painsomnia is no small undertaking, of course. And the previously accepted practice of throwing more pain pills at the problem is clearly not the answer. The opioid addiction epidemic in the U.S. is staggering — with more than 115 Americans dying every day from opioid overdose. There are lots of individuals and groups working to stem this tide. That’s a good thing.

But it’s not enough. In parallel, we need to create positive alternatives. The reality is that 1 in 2 Americans now lives with a chronic disease, and the numbers are only increasing. Severe pain — pain so bad you can’t sleep — is common among people living with a wide variety of chronic diseases. That’s not something we can ignore. As an industry, we must actively work to develop better pain management therapies and protocols, as well as fight the underlying causes of that pain — be they physical or mental, structural or inflammatory. We need to ensure patients feel heard — by actually listening to them.  And we need to aggressively educate and empower patients with the tools to tackle painsomnia and avoid its dangerous undertow.


Patient Education | MyHealthTeams

By Eric Peacock, cofounder and CEO of MyHealthTeams

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Patient Education — with patients teaching us what’s most important
From research to activation in MS

The highlight of my summer was a European speaking tour making stops to talk with the leadership teams at six different pharmaceutical companies and at Cannes Lions on the Healthcare Insights stage. I give a talk called “Unfiltered Truth: 10 Lessons Learned in Patient Social Networking” sharing real case studies where simply listening to patients in as unfiltered a way as possible, leads to massive opportunities for patient education.

The case study that consistently resonated with European audiences is the story of the “MS & Cognition” Resource Center we launched on MyMSTeam in partnership with Biogen. Our work together started with social listening that identified cognitive problems such as “brain fog,” “difficulty finding the words to say,” and “forgetting my best friend’s name” as a top-five symptom impacting quality of life. We decided to dig deeper with an 830-patient quantitative survey that validated that, in fact, 52% of MyMSTeam members suffer from cognition issues. But we were surprised to find that 49% of those people actually started experiencing these cognitive problems before they were diagnosed with MS.

This is astounding. And it debunks some of the conventional wisdom saying cognitive problems typically arise after diagnosis with MS. The reality is that many people (and their primary care physicians) were chalking up issues such as memory loss, difficulty multitasking and trouble concentrating to a wide range of other possible causes, from lack of sleep, to age, to menopause and not getting referred to a neurologist for an MS diagnosis. And even those who had been diagnosed with MS weren’t necessarily aware of the link between cognition, brain health and MS because their neurologists weren’t talking to them about it. This is a patient education gap if ever there was one.

Once we identified this gap in knowledge, we knew we needed to do something about it. So we worked closely with Biogen to create an unbranded, cognition resource center, an innovative patient education program designed to help people understand how MS impacts cognitive functioning. The center shows the the signs to look for, provides practical tips for managing cognitive challenges, and offers guidance for discussing brain health with your neurologist.

The response in the first two months has been overwhelming. Tens of thousands of diagnosed MS patients have come to the resource center, with thousands downloading doctor discussion guides and content to help them manage daily cognition challenges and initiate discussions with MS experts about brain health. Our members have underscored how valuable this information is to them as well as how much they appreciate feeling heard by a biopharma company.


What most executives find compelling about this story is that it ends in action.  This is a research-to-activation story where real patients, on a patient social network, revealed an education gap that Biogen and we quickly filled with actionable patient education. It shows how patient social networks can be a powerful two-way communications channel for going direct to patients (in this case in an unbranded way). It led to them generating dozens of new ideas of things they could try in their businesses.

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Now we’re bringing this tour to the U.S., sharing an updated “10 Lessons Learned” and adding examples of educating and engaging patients with branded DTC content as well. We’re hoping to inspire and be inspired by U.S. biopharma execs interested in implementing this research-to-activation model in any of the 29 conditions we currently serve – as well as in new conditions we’re exploring.  If you’d like us to speak at your company, please reach out to start the discussion.

Spondyloarthritis Resource Center Provides Information And Tips For Dealing With Chronic Back And Joint Pain

MyHealthTeams and UCB team to educate consumers
about symptoms and accelerate time to diagnosis

San Francisco – August 8, 2018 – MyHealthTeams and UCB today introduce the Spondyloarthritis Resource Center within MySpondylitisTeam, the social network for people living with spondyloarthritis (SpA). Spondyloarthritis is an inflammatory disease that affects the spine and can affect the joints of the arms and the legs. In some people, spondyloarthritis can also affect the skin, intestines and eyes. The most common symptoms of the disease include lower back pain, stiffness, joint pain and fatigue. The Spondyloarthritis Resource Center is designed to increase awareness about spondyloarthritis, help people recognize symptoms to get a diagnosis sooner, and equip people with questions to ask their doctors.

Spondyloarthritis is an underdiagnosed condition. The National Institutes of Health (NIH) estimates that more than 1% of Americans are living with spondyloarthritis, with most people first experiencing symptoms in their 20s or 30s yet many take a long time to get a correct diagnosis. It’s common for chronic back pain patients to wait as long as 10 years between symptom onset and spondyloarthritis diagnosis, according to a 2016 study published in Arthritis and Rheumatology.

“Providing resources that help people experiencing SpA symptoms better understand what’s happening, talk to their doctor about it, and explore potential solutions empowers patients and may help them get to a diagnosis sooner,” said Emmanuel Caeymaex, Head of Immunology and Executive Vice President, Immunology Patient Value Unit, UCB. “Providing these resources in the context of a social network where people are seeking trusted information and authentic connection ensures we’re reaching the right people, at the right time, with the right message.”

Featured content within the Spondyloarthritis Resource Center includes:

  • An interactive quiz that helps people identify symptoms related to spondyloarthritis
  • A discussion guide that helps them talk with their doctor about the symptoms
  • An infographic that explains key information about the condition
  • A step-by-step illustrated guide to exercises for better posture, which can help relieve discomfort


“Every day we see that people are taking an active role in managing their health, and providing them with the tools to better understand and address a disease like SpA is an important part of our commitment to members,” said Eric Peacock, co-founder and CEO of MyHealthTeams. “Teaming with a global biopharmaceutical leader like UCB, with a focus on patients living with spondyloarthritis, is hugely valuable to MySpondylitisTeam members, and it’s a great example of how social networks serve as a powerful two-way communications channel between the industry and consumers.”

MySpondylitisTeam has attracted more than 15,000 registered members since its debut earlier this year. In addition to the web, MySpondylitisTeam and the new Spondyloarthritis Resource Center are available via native mobile app for both iOS and Android.

About Spondyloarthritis
Spondyloarthritis is a family of immune-mediated inflammatory diseases impacting joints and the spine, which are chronic, painful and progressively debilitating conditions, where ongoing inflammation and disease progression leave patients with reduced mobility and functionality, as well as joint stiffness and crippling pain in affected areas.


About MyHealthTeams
MyHealthTeams believes that if you are diagnosed with a chronic condition, it should be easy to find and connect with others like you.  MyHealthTeams creates social networks for people living with a chronic health condition.   More than 1.5 million people have joined one of the company’s 29 highly engaged communities focusing on the following conditions: Crohn’s and colitis, multiple sclerosis, lupus, fibromyalgia, pulmonary hypertension, spondylitis, eczema, hyperhidrosis, rheumatoid arthritis, psoriasis, irritable bowel syndrome, Parkinson’s, Alzheimer’s, epilepsy, hemophilia, depression, heart disease, type 2 diabetes, osteoporosis, COPD, chronic pain, migraines, food allergies, obesity, HIV, PCOS, endometriosis, breast cancer and autism.  MyHealthTeams’ social networks are available in 13 countries.


About UCB
UCB, Brussels, Belgium ( is a global biopharmaceutical company focused on the discovery and development of innovative medicines and solutions to transform the lives of people living with severe diseases of the immune system or of the central nervous system. With more than 7,500 people in approximately 40 countries, the company generated revenue of €4.2 billion in 2016. UCB is listed on Euronext Brussels (symbol: UCB). Follow us on Twitter: @UCB_news


Media Contact
Michelle Cox