Media Savvy – A Proactive Message

By Craig Maupin at http://cfidsreport.com

Media advocacy is extremely important for the chronic fatigue syndrome (CFS) community. This illness, more so than any other, can benefit from solid media advocacy. Government efforts to help those with CFS will reap mixed consequences until some of the misinformation, public apathy, and controversy toward CFS are dealt with. Many of the early problems faced by the AIDS community were dealt with by crafting a simple, yet effective media response. AIDS was the first advocacy community to realize the incredible power wielded by the media. They knew true political gains would only come when they had convinced the public that AIDS was worthy of being a major research and medical priority. Then, they went about doing just that.

Even so, all media efforts are not created equal. Often, a look at the CFS community's efforts on the Internet, has led many of my acquaintances to assume that CFS is simply another in a long list of complex symptoms and emotionally charged issues. This is why it is not enough for the CFS community to assume that our leaders realize the true power of the media. We need leaders that have media savvy as well.

So, what does a leader with media savvy do?   Below, I will point out some of the keys to look for. First, as media savvy centers his/her message around  a game plan.  It is is credible, well spoken, and avoid controversy.   And, they understand how to convince the public that CFS is real, distinct, and devastating. They spend time on their simple message, and they stay on the offensive. They simplify.

Invest and lay groundwork

To be successful in media advocacy, an investment has to be made. Local markets are often assessable, while national markets are often closed, closely controlled, and seemingly inaccessible. Breaking through on CNN or Fox News is often a matter of whom you know, not necessarily how important your issue is. That is why investments are important to making waves on the national scene.

A media savvy leader will invest and lay groundwork before opportunities present themselves. This means being prepared for upcoming opportunities. This means forging relationships with media contacts that may be sympathetic or willing to help. Often, personal sufferers of CFS with relationships with those working in media may be able to point their leadership in the right direction. Then, a savvy leader will use that groundwork sparingly and with discretion. If you go to the well with a less than golden opportunity, don’t be surprised if the well is dry when a better opportunity presents itself.

Sometimes a leader can create an opportunity for media coverage by calling a media outlet and asking them why they only covered on half of the story. Would they be interesting in covering the entire story?

Often the AIDS community used local patient advocacy get small market coverage. Eventually, this small market coverage can filter up to major market coverage. To really make a headway against chronic fatigue syndrome (CFS), investing in media before opportunities present themselves is a must. We haven’t done that wholeheartedly, and we have often appeared to be waiting for CFS coverage to generate itself. That will never happen.

Plan Ahead - The Rolodex Method

During a recent political campaign, a political advisor to a candidate had a small Rolodex on his office desktop. Inside the Rolodex was his plan, in very simple soundbites and talking points. He was well prepared to keep his opponent on the defensive, and his Rolodex kept him focused on his media tools of his trade. If he was asked about an issue, he quickly flipped a card over and there was a list of soundbites and ideas he knows he wants to hit “My key issues are ---”. Sometimes, he finds a name, instead of a phrase in his Rolodex. “You may want to talk to this “person”, who will be affected adversely by my opponents political proposals, ect…. “

An effective advocate for chronic fatigue syndrome (CFS) will operate in much the same way. He, or she, will have a gameplan to move public opinion in the direction they want it to go. A leader with media savvy always stays on the offensive, using a proactive rather than a reactive, message. They have a plan that is simple and that the common populace can digest. The best media efforts have not been crafted on the fly, but in back rooms by skillful advocates. And, these messages are often simple enough to fit in a Rolodex.

Keeping it simple

So, what might be in our CFIDS Rolodex? The public has distaste for anything complex, confusing, or long-winded. Effective media coverage for CFIDS will understand the quick-hitting soundbite and slogan era we live in. If it can’t fit on a note card, it may not even be aired, much less absorbed.

Emphasize the distinctiveness of CFIDS.  “Some hallmark symptoms of CFIDS are… ---- ”. Disabling activity/intolerance and delayed recovery, as well as orthostatic/circulatory problems are truly unique to CFIDS. These symptoms of CFS are distinct, and can be simply conveyed without complexity. They are an undervalued selling point.

Make liberal use of personal stories and real life examples - Show them what CFIDS can steal with real life examples. “Here is the name of a patient you may want to contact.” “Another patient I know of lacks medical coverage.” “Some patients lose their family’s support, would you like to speak with one?”

How costly can this illness really be? - Is CFIDS really that serious? What are few examples? Should I really be that concerned? These are questions we should attempt to answer with our media efforts. “I have seen CFIDS take --- from people and cause ----.” CFIDS has a price, often above and beyond what normal illnesses exact. We often haven’t made that clear to the public. We should do so.

A savvy leader will attempt to insert his message into media stories in soundbite form, avoiding anything too complex or boring for their target audience to understand.

Calm credibility

Right now, the most pressing problem for chronic fatigue syndrome (CFS) advocacy is moving the illness from controversy to credibility. A savvy leader will not inadvertently attach the illness to controversy. If a spokesperson looks angry, flustered, or radically out of step with the conventional, credibility is unwittingly sacrificed. As someone who has lost almost everything to this illness, it can be very difficult to be calm when dealing with the subject. But to win the confidence of the public, a calm demeanor is a must.

Editorial Discretion

We often innocently portray chronic fatigue syndrome (CFS) as a disease of many fad cures and controversial treatments, or large laundry list of unrelated symptoms and diseases. Our media efforts have often given the false impression that CFS is an alternative disorder rather than a mainstream illness. Our credibility flags when we do this. To the public this simply paints a complex and controversial picture of CFIDS. Editorial discretion is a huge part of establishing credibility. A savvy leader will use a controversy filter, and keep their media efforts on CFIDS away from non-related controversies.

Seek emotional impact

One of the most effective tools employed by the AIDS community was emotional impact. Their leaders used editorial discretion and savvy choices to select those stories that would move the public’s attitudes. Often, children were the featured subjects who were forwarded by the AIDS community to the public. This was not an accident; it was careful planning. They knew that unless they tugged at the heartstrings of the public and made the public feel, apathy would remain entrenched.

Effective leaders know how draw a strong emotional response from the public. In the past, this has not been something at which the chronic fatigue syndrome (CFS) community has been adept. The public has questions about CFS. Can it happen to a person like me? What could I lose if I had CFS? What is having CFS like? Why is a cure necessary? We need to not only how to answer these questions, but we need to strive to make the public feel an emotional response to these questions as well.

Don’t ignore the smaller markets - There is not one given way in which a person with chronic fatigue syndrome (CFS) can give more than in securing stories on CFS from small-market media. While the larger markets are often difficult to break into (requiring time and investment), the smaller markets are often as easy as a phone call to your local paper or TV station.

The key here is to make good decisions and wait for an opportunity (such as a research breakthrough/advance). Individual advocates can show media savvy themselves, and in fact, they can play their own media representatives by making judicious choices. Local advocates and support groups can influence public attitudes in their region, eventually influencing the national market as a whole.

Major market and national media coverage is very hard to come by. Much of national media outlets are closely controlled, and access is given only to those deemed worthy. For CFS, smaller markets have more immediate accessibility. One story in a local paper that is credible and draws and emotional response can be worth thousands of dollars. These local efforts can build political momentum If there is one way local activists with few financial resources can give a large amount to efforts against CFS, this would have to be it.

A Proactive Message

I can’t think of one area that much of the chronic fatigue syndorme (CFS) community has spent more time on than on those critics who attempt to paint, subtly or directly, CFS as a behavioral issue. While it is true that we need to address these special interests, often our way of addressing them has unwittingly been defensive. Good media policy takes the offensive, making the behaviorists seem irrelevant or out of touch. It sets its own agenda, rather than getting into a pattern of reacting to the agenda of others. It can paint a picture of these critics without even addressing them personally -- a picture that the public finds a distaste for.

A recent example of this couldn’t have been more apparent by the differing direction taken by two different chronic fatigue syndrome (CFS) leaders when responding to the behaviorists. When the topic was raised that researchers were claiming that behavioral modification was the paramount research and treatment paradigm for CFS, both leaders took different routes in dealing with it. One spent a lot of time on the issue, and said that those with the illness need to be open minded to behavioral dysfunction. The second leader’s response was clearly more effective. He/she quickly pointed out that some patients were getting poor results from the prescribed exercise therapy, gave the reporter a clear example, and then more importantly, moved on to the proactive stories/research that he/she wanted covered.

To a casual observer, the results of the two approaches couldn’t have been more apparent. The first leader clearly appeared to be defensive; he even seemed to portray his own community as if it were of doubtful credibility. He lingered on the subject for quite a while. The second leader was more effective by crafting a quick response then moving on to his own message. A leader that stays on the offensive will:

Be uncompromising - The second leader was truthful, but more importantly, he/she was also uncompromising. It is not hard, and it is very effective.

Place doubt on your critics - The first leader was prepared. “I know of those studies, but am hearing from patients who are…” Upon reading the final story, this one soundbite made the behavioralists appear nothing more than a passing controversy or special interest group seeking funding for a provided service.

Give examples - The first leader quickly was prepared with a first hand example/referral of his/her critic’s limitations. This can be quickly done.

When the opportunity presents itself, Tie your critics to that which is unsavory, profitable, and inflexible - This was a technique that was often used by the AIDS community. In the early 80’s, the AIDS community was able to secure newspapers and television stories that took a strategy of tying persecution and lack of understanding to critics of the AIDS community. It is an opportunistic strategy, and only should be used if the right opportunity presents itself. But it is VERY effective, and this tactic can completely change the course of public policy debates and issues.

Leaders with media savvy often can smoothly steer the direction of a public policy debate by showing how persecution and public misunderstanding may be drawing strength from their critics. What makes this technique difficult to implement is that usually a reporter or media contact must already be interested in helping those with CFS before the story is done. But it can be done and done well [ Ryan White, et al ]

Answer your critics quickly, and move on to your own message- The proactive leader did just that. He/she didn’t want to spend most of his/her time addressing critics in a defensive posture, wanting the public to hear their won proactive message. Quite simply, he or she moved on. The second less effective leader did not.

Know the tools of effective media policy

Effective leaders know the tools of the trade and capitalize on opportunities when they present themselves. Some of the tools of their trade are:

A personal story – Choose the most powerful stories to illustrate to the public how severe or worthy your cause is.

Research - Some truly quality chronic fatigue syndrome (CFS) research is in the works as we speak. Sadly, many in the public and medical communities would never know it.

Paint a distinct illness – The distinctiveness of CFS is an under appreciated tool in moving the illness forward. There is no other illness has the post-exertional or orthostatic symptoms of CFS.

Conclusion

It is interesting to watch the talk shows on news channels like CNN, Fox News, and MSNBC. Over time, I have come to appreciate those guests who shrewdly present their message in a thoughtful manner. When leaders like that take the stage on behalf of CFS or CFIDS, we will begin to make steady progress.

When we begin to generate positive attention about chronic fatigue syndrome (CFS) in the media, then the tide against CFS will slowly, surely begin to turn. An offensive, proactive message should be our goal. It has long been the missing ingredient of CFS advocacy. It should be the primary ingredient --more than an afterthought; it should be our focus.