Media Savvy - The Mistakes We Make

By Craig Maupin at http://www.cfidsreport.com

All media efforts are not created equal. Some are credible, well focused, and effective. Then there are media efforts that are ineffective and even counterproductive. It is not enough to merely focus on getting out a message. The messages chosen, as well as how each message is delivered, play a tremendous role in determining effectiveness. Media efforts that are not competent can actually reinforce negative perceptions and attitudes. Corporations and politicians know this, and spend millions of dollars a year for media consultants who are paid to make sure the message they deliver is effectual.

Most efforts on behalf of educating the public about chronic fatigue syndrome (CFS) are well intended. Many are very well done. Even so, it is a good idea to ask what kind of impression does the public often get from our efforts? Are we convincing them that CFS is a serious illness? Are we really giving a lot of thought to our strategies, methods, and public perceptions of the CFS community? Some of our efforts have hit the mark, but others have reinforced in the public’s minds, albeit unintentionally, that CFS is not a serious or credible illness, and that, is the motivation behind “The Mistakes we Make.”

One of the most revealing tests I have done is to send new acquaintances who were unfamiliar with chronic fatigue syndrome (CFS) out on the Internet looking for info. Our own community produces most of the information about CFS on the Internet, and it is very interesting to discover what the uninitiated learn from our efforts. It did not surprise me that a few of my “test subjects” came back from their excursions convinced that CFS is controversial and confusing. Was that the intention of our efforts? Of course not. But good intentions are not the arbiter of exceptional results, good planning and execution is.

Listed below are some of the common “mistakes we make” in how we present chronic fatigue syndrome (CFS) to the public. I have seen these mistakes repeated again and again. If we are to turn around the public apathy and opinion toward CFS, they deserve more debate and introspection. To convince the public of the gravity and credibility of CFS, we need consider the projected and potential unintended results our media efforts will have.

Mistake 1# - Taking a Defensive Posture -- Inadvertently reinforcing controversy…

It is easy to get sucked into a defensive posture. Both the chronic fatigue syndrome (CFS) and M.E. communities need to respond to critics; however, there are inadvertent consequences in placing our emphasis on responding to the efforts of our critics. What has often results from a defensive posture is an unintentional reinforcement of the idea that CFS is controversial, not widely accepted, and not credible. And inadvertently, their message gets free distribution in the process. Here are some ways we end up in a defensive posture.

A. Spend most of your time responding to your critics rather than crafting your own message. Unfortunately, many chronic fatigue syndrome (CFS) web sites are totally dedicated to a defensive response to our critics message. We can’t totally ignore our critics, but we would be far better served to spend more time placing our message before the public. Success will not be had until they are required to respond to our efforts, not vice a versa.

B. Unintentionally give your critics your resources. On a recent message board for M.E., 80% of the posts were dedicated to our critic’s message, often in the form of lengthy abstruse responses to the Wessely School. What does the public truly see when they see these efforts? The unintentional result is that they see more controversy! Popular music acts marketed toward teens have always known that the best publicity is often the most angry, reactive response to their acts. Stirring up the masses can be good for business. Elaine Showalter, on her book tour to promote her book criticizing those with CFS, made frequent mention of protesters often outside the bookstores and studios where she was speaking. She knew that they were selling her book. Yes, there are times when the CFS or CFIDS community needs to respond. But that should never be the main focus of our efforts. Our focus should remain on our own message foremost.

Mistake 2 # - The Disease of 1000 Cures

There are two very strong demands placed on our own resources. First, there is an incredible hunger for treatments to alleviate the disease. When many people have lost families, careers, and their health to an illness, they want a cure. That is very understandable. After all, I want a cure and effective treatments as well.

Second, there is a profit-motivated demand from the self styled “gurus” who are willing to provide this fix. Many chronic fatigue syndrome (CFS) “experts” have sprung up claiming that they can cure the vast majority of patients with CFIDS.   These “gurus” offer treatments that are controversial and lack public acceptance or scientific credibility. “How homeostatichydrotherapy cured CFIDS in 85% of my patients; it can for you too”! I have seen the CFIDS community give these curative gurus (and their controversial treatments) our resources to sell their products. But, what does the public see?

When a major chronic fatigue syndrome (CFS) publication sent out a survey of what the CFS community wanted them to print, many responded by saying that they wanted a regular section on treatments for CFS. This certainly fills a demand. That is indisputable. But what will the effect be on the public, which is not yet sold on the idea that CFIDS is a serious illness or worthwhile investment?

I recall seeing a group holding a advocacy campaign to help “find a cure” and a “cause” for CFS. After the meeting, which was heavily attended by the general public, they gave the platform to a person who said he had cured his CFS by tapping into mystical and ancient spiritual energies. This group shouldn’t have been surprised if much of the general public in attendance came away less than convinced that CFS was a less than a severe, physical illness.

Mistake 3# “Clearinghouse of Information” over Editorial Discretion

Bigger isn’t always better. At my web site, I would truly rather update the site once every 3 months than to hand over my resources to that which may not portray the illness in a credible light. More volume isn’t always a sign of success! Editorial discretion is important to moving chronic fatigue syndrome (CFS) forward. Who gets our resources? What impression does someone who is unfamiliar with CFS get from our efforts? Controversy? Confusion? Or, convincing, credibility? These questions go to the heart of editorial discretion. I would choose editorial discretion over the “clearinghouse of information” approach each and every time.

Mistake 4 -- Watching Golden Opportunities Slip Away - The Price of Failing to be Opportunistic

Things will not turn around for the chronic fatigue syndrome (CFS) community until we are able capitalize on rare, yet golden, opportunities. One of the most effective tools for AIDS advocacy has been the commitment of advocates to capitalize and even create opportunities that would achieve a positive response from the public. The story of Ryan White was not something that just happened. Advocates understood that there was powerful message within his unfortunate circumstances.

As someone who has lost a great deal to this illness, the hardest thing for me to contemplate is how opportunities are allowed to slip by with our exploiting them. I vividly remember more than a few examples. Not only were we unable to capitalize, but we were been unprepared and didn’t even bother to notice that a terrific opportunity was knocking. There are more than a few examples.

1. The Elaine Showalter Book Tour - Most long-time chronic fatigue syndrome (CFS) advocates remember Elaine Showalter. Showalter referred to herself as a “neo-feminist” author. She wrote a book claiming she had observed unmistakable congruency between those who have CFS and alien abductees and Satanists. While many in the CFS community were getting angry and forming protests, a golden opportunity to paint our critics to our liking, as well as put out a proactive message of our own, was slipping by.

In all my years of having this illness, there was not a less credible, bizarre spokesperson to take the stage on behalf of a behavioral model for CFS. Showalter was not only unqualified to make what appeared to be clear medical assertions, but her ideas were often quirky. A credible, media capable spokesperson and patient advocate sitting by an author who compared CFS patients to Satanists and alien abductees could have been an absolute goldmine. And given the sensitivity of many shows to portraying themselves as objective, it was just a phone call away.

Often, the CFS (CFIDS) community is too busy getting angry to realize an opportunity, do some clear thinking, and exploit that opportunity. In this case, we were unable to capitalize on a clear winner. What originally looked to be negative, was an opportunity we let slip away. Media savvy leaders would have easily been able to use Showalter book tour for some proactive story telling of their own, with overwhelming results.

2. Research Breakthroughs - Research breakthroughs have not occurred very often in the last 15 years. But nonetheless, they have come. That is why it is so important to take advantage of them. In the early 90’s, Temple University researcher Robert Suhadolnik found an aberrant molecule in the anti-viral system of chronic fatigue syndrome (CFS) patients. Little or no or coverage followed. In the late 80’s, David Streeten found that his samples of CFS patients had low circulating blood volume. No coverage. Soon, gene profiling may present such opportunities. Will the foundation be established and the calls be made to capitalize on these opportunities? They should be, but often in the past, we were focused elsewhere.

Is it the media’s fault? Perhaps they share some of the blame, but not entirely. If we want chronic fatigue syndrome (CFS) to be credible and taken seriously, as well as build momentum for our cause, we have be prepared to exploit such opportunities. It will take an ability to create a wider coverage for CFS research advances to make progress against CFS.

It takes time, money, and a slow buildup of important connections to capitalize on research breakthroughs. You simply cannot feed them into the wires. We need to make that investment wisely, each and every day, before these opportunities happen. We need leaders who are media capable and able to appear on news and talk shows after any given research breakthrough. Until these leaders take the stage, success for CFS advocacy will be slow.

Even local activists can get into the act, urging their local papers or television stations to cover major research breakthroughs for chronic fatigue syndrome (CFS). Sometimes this is easier than tapping into the closed national market, and these small stories can have an impact on thousands of people who will play a role in our lives and our future.　

Wrapping it up

Almost all efforts on behalf of chronic fatigue syndrome (CFS) are well intentioned. Many are exceptionally done. Sometimes we fail at media savvy in the CFS community because we simply haven’t thought a lot about the topic. Media savvy requires a lot of thought, strategy, and careful execution. When it comes to effective media advocacy, results are not tied to intentions; they are tied to a sound, credible game plan and the preparedness to make that game plan happen. When we see that happen for CFS, we will reap some outstanding results.