The Patient Side of Science

As science marketers our work extends throughout the life sciences continuum, from the tools required for basic research, through to the therapies and diagnostics that impact patient care. We strive to strategize and communicate the best possible positioning in each instance. But along the way, our work inevitably creates messaging that we don’t intend.

These marketing side effects are not necessarily bad; they’re just the reality of engaging with a patient population. There’s no how-to guide for adjusting to a chronic disease. Newly diagnosed patients learn about their disease identity in part through the media around them – the media we create.

Every image we connect with a condition is loaded. Do we show the patient as positive and powerful – or are they sitting, passively listening to a man in a white coat? Should they feel weak – does society see them as weak? Do people now feel sorry for them? The language we use also speaks volumes, painting a picture of a patient suffering, battling or living with their condition.

There’s a great deal of responsibility connected with what we do. It’s therefore important to occasionally stop and reflect on the real patient experience, to ensure the work we do has a truly positive downstream effect. Here we share a powerful case study from the patient side of science…

A disease by any other name

Can you imagine the most basic tasks of your life, like showering or cooking, requiring the effort it takes to conquer Mount Everest? If you can, then you have just a small taste of the daily struggles faced by patients with Chronic Fatigue Syndrome (CFS). However, the reality for many of the estimated one million Americans struggling with this debilitating illness is that they are often dismissed, in part because the disease is invisible, misunderstood, and not recognized by all clinicians.

For decades these individuals have been written off as depressed, lazy, or labeled as having the “yuppie flu;” suffering from modern apathy. This despite Mark Loveless, M.D., stating in a Congressional Briefing that patients are “as ill as an AIDS patient in the final two months of life.”

In February, the Institute of Medicine took a bold step towards helping CFS become more accepted as the serious illness it is. As part of their Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness report, the Institute took the unusual step of rebranding the disease, the diagnosis – even the name.

As a communicator I was drawn to the committee’s decision to rename CFS to Systemic Exertion Intolerance Disease (SEID). Dr. Ellen Wright Clayton, chair of the committee, noted, “It’s clear that Chronic Fatigue Syndrome does tremendous disservice to these patients.”

Patients have long since felt that the terminology “chronic fatigue” devalues the importance of their symptoms. Imagine you suffered from this debilitating disorder but were constantly met with comments such as “Oh, I’m tired all the time too” or “We all get more tired as we get older”.

So why did the committee decide on SEID? It felt the new name more closely reflected the essence of the disease. In other words, the new name is meant to better represent the major diagnostic criterion of experiencing extreme exhaustion after minor physical, cognitive, or emotional exertion.

Dr. Lucinda Bateman, a member of the committee, told NPR; “The panel chose ‘disease’ rather than ‘disorder’ because ‘it’s a stronger word.’” While the new name doesn’t easily roll off the tongue, each word seems to have been carefully selected to impart as much meaning as possible. It will be interesting to see the impact this rebranding has for promoting understanding and awareness of CFS. In time, it may even improve patients’ treatment and outlook.

We’ve all heard the old adage, “Sticks and stones may break my bones, but words will never hurt me.” In reality, words have a profound influence on how we perceive the very things they describe and even have the power to trivialize critical issues. However, as this rebranding shows, they can also bring new attention to serious conditions, hopefully leading to more funding, more research and tangible improvements to SEID sufferers’ quality of life. For our part, as science marketers, we must hold ourselves accountable to how we portray any patient groups.