Naming is not branding: a lost opportunity for Chronic Fatigue Syndrome

“The Institute of Medicine (IOM) is an independent, nonprofit organization that works outside of government to provide unbiased and authoritative advice to decision makers and the public.”  So says the lead sentence on their website page, About the IOM.  As advisors, independent authorities can offer a refreshing perspective.  But when it comes to Condition Branding, the IOM failed to abide by the first, best-practice principle: include constituencies other than yourself in the process.

Our federal government asked the IOM to rename Chronic Fatigue Syndrome (CFS), a term coined by the Centers for Disease Control in 1988.  According to the Mayo Clinic, Chronic Fatigue Syndrome (CFS) is “a complicated disorder characterized by extreme fatigue that can’t be explained by any underlying medical condition.”  One can see why our government asked the IOM to improve upon this vague—and therefore useless—name.  It trivializes a very real illness that affects an estimated one million people.  It may as well have been called Not Feeling Well Disorder.  CFS also does not offer any diagnostic criteria, or any clue to treatment protocols.  These are the faults that the IOM set out to address in their initiative.

The solution they published this week is Systemic Exertion Intolerance Disease, or SEID.  The name does highlight the central defining aspect of the illness—that subjects become dysfunctionally tired after mild exertion, like taking a walk.  However, the role of a disease name isn’t just to label a symptom, but rather to create a rallying concept that stimulates dialogue, points to specific treatment modalities, and most importantly, unites all constituencies—doctors, patients insurance companies, advocacy groups—in a concerted effort to resolve the matter.  SEID doesn’t do that.

While I could critique the name (say what?) or the acronym (how is it pronounced?), the primary problem isn’t what the IOM came up with, but rather how they came up with it.

Illness names should be branded, just like produce, service and company identities.  Why?  Because giving something a name without branding dooms it to being used only by those who created it.  Patka, Ordek, Canard, Raca, and Anatra all mean the same thing in their respective languages: a duck.  However, anyone not speaking those languages would never know this.  Coca-Cola, Nike, Apple, and Tiffany immediately call to mind not only what they are, but more to the point, what values are associated with them—what all parties will get universally when engaging with them.

Condition Branding, a term I coined in 2003 for a protocol perfected by myself and others in the branding field, is a best-practice means for not only creating a disease name, but also a Condition Brand with universal appeal.  Gastroesophageal Reflux Disease (GERD), Overactive Bladder (OAB), Erectile Dysfunction (ED) are all great examples of not just names, but rather Condition Brand names.  They were developed not in a bubble, as with SEID and the IOM, but with the input of everyone who needs the name to reflect their own personal investment in identifying, sympathizing with, treating it and getting financially reimbursed for such treatment.  All the IOM has done is re-name the condition without all the other aspects needed to truly make the name a brand—a universal password that defines a total experience.

OAB does what SEID does in that it identifies the root problem, in this case, overactive bladder.  But by involving all constituencies in the coining of the name, OAB reflects the values and actions they need the name to have: patients (I’m not incontinent; it’s not my fault; there’s no stigma in have a bladder that overacts); doctors (I don’t have to make my patients feel ashamed when I tell them what they have); insurance companies (I will pay for a drug that resolves bladder over-activity because it reduces the total cost of trial and error).

The same is true for GERD.  The problem it needed to resolve was to show the world that a trivial thing called chronic heartburn is really a serious medical condition that patients shouldn’t treat themselves with over-the-counter acid neutralizers.  Heartburn has nothing to do with the heart.  And it isn’t caused by eating spicy foods, as the “plop plop fizz fizz” Alka Seltzer commercials would have you believe.  It is a weakening of the esophageal sphincter, the closure that prevents acid in the stomach from rushing upwards into the esophagus (acid reflux) and causing inflammation, pain and potential long-term tissue damage.  GERD didn’t just rename heartburn, it also created a branded condition designed to completely change the illness paradigm.

“Finally, Chronic Fatigue Syndrome will be taken seriously,” boasts a Yahoo Health headline.  Really?  Some are already arguing that the name will be as much of a non-event as its previous moniker.  Leonard A. Jason, a psychology professor at DePaul University correctly points out, “The committee has come up with a name without vetting it. And they will basically get a tremendous amount of discontent and dissatisfaction right from the starting point, because the patients want something very different.”

Today, the seeds of Condition Branding must be sown in a convoluted landscape of audiences involving pharmaceutical companies, authorities at leading academic schools of medicine (referred to in the trade as ‘thought leaders’), the entire medical community that treats patients, support societies, advocacy groups and consumers. Further, the effort must be coordinated with multiple communication agencies in the fields of branding, advertising, education and public relations for it to have any hope of doing a complete job of changing the diagnosis and treatment paradigm.

We can applaud the IOM for trying to help make Chronic Fatigue Syndrome, or myalgic encephalomyelitis, as it is also known, more specific and credible.  However, by not reaching out to key constituencies and forming a consensus, and not enlisting the services of experts who have actually performed successful Condition Branding initiatives, the IOM has failed in its larger task.

Call it CFS, SEID or any other of the ideas that must have been explored.  If Condition Branding is done in a vacuum, then it will remain in a vacuum.  And that’s just sad for the one million sufferers who deserve better.