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Advocacy Ruts 4: Modern Advocacy

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

 

Swinging at air…

In the popular cartoon "Peanuts", Charlie Brown repeatedly attempts to master his ambition of kicking a field goal. He concentrates, and then he sprints forward. But just as Charlie Brown is ready to realize his ambition, Lucy yanks the ball back. Predictably, Charlie Brown lands on the dusty surface of the football field, frustrated and demoralized!

Charlie Brown never pauses to evaluate his gameplan. As if by some unwritten rule, he continually repeats the same pattern. He always picks Lucy as his holder. He always gets an emotionally powerful running start. And, he always fails. In the process, he gets angrier and more frustrated. Charlie Brown is in a rut.

Could our advocacy efforts have found a comfortable rut? We certainly haven’t lacked for passion. However, we have often invested that passion in "quick fixes". Sometimes, we have invested our energy on interfamily feuds over which "quick fix" should be our primary mission. Through it all, problematic public, professional, and governmental attitudes toward CFS remain unabated.

Changing the gameplan to change the fortunes

Unfortunately, many of my friends have faded from the rolls of advocacy.  They do not believe our traditional political advocacy patterns will succeed.   Weary from years of little progress and the usual strategies, many have simply given up hope.

Advocacy itself is not broken.   Perhaps our strategy simply needs to be carefully rethought. Perhaps our age-old assumptions need to be reexamined.

Advocacy is changing -- modernizing.  In the early 1980’s, AIDS advocates realized that political success was contingent on public attitudes.   Media success would bring funding success behind it.    When Ryan White’s story became headlines in the U.S., it wasn’t a spontaneous accident.  Someone, somewhere, realized his story was an opportunity for a powerful assault on entrenched public attitudes.

CFS advocacy must be media central.  Imagine seeing a devastating story on CFS featured on the nightly news or the local newspaper. What if microbiological and circulatory research breakthroughs found their way to the public's eyes and ears? These things have rarely happened with chronic fatigue syndrome in the past, but when they do, powerful changes will occur.

Traditional political advocacy merely follows a formula that is applied to all issues: write your congressman, ask for more funding, shake hands with political powers-that-be. The benefit last a short time, if at all.  This type of advocacy --traditional-- has a limited impact.

   Modern media advocacy uses modern tools, such as the newspapers, TV, and the internet, that possess exponential power. This modern approach to advocacy fits our situation with chronic fatigue syndrome to a “T”.    Here’s how:

  Our energy and our limited financial resources have often been invested on traditional approaches with limited returns, rather than modern media approaches with immediate return. If we continue to think of media advocacy as an afterthought, we will continue to see little progress. Our emphasis and investment patterns have to change if we are to make progress.

Thinking Opportunistically

Our advocacy efforts must anticipate, prepare for, and recognize opportunity. Several microbiological research findings wholly exclusive to CFS surfaced in the 1990’s. Today, ten years after the fact, I often wonder how different things would be if doctors, legislators, and the research community had read of these findings on the front page of their newspapers. Do research breakthroughs help those with CFS if they never reach the public?   It is an interesting question.  I don't think research has little effect if it stays buried, away from the public eye.

Effective advocacy is always asking these questions. For instance, 'A schoolboy in ‘X’ville was expelled from school after administrators seemed to suggest CFS was not disabling; is his story an opportunity to change public attitudes?'   Or, "A researcher is coming out with favorable results soon, should we work with that researcher to get some coverage of his findings?"   Opportunistic thinking will be required to make headway against CFS.

Editorial Discretion

While CFS is a controversial issue, our editorial discretion matters significantly. If we send an ambiguous message that CFS is rehabilitative or cured by hundreds of unrelated treatments, we should expect public resolve against CFS to remain low. Despite this, a recent poll claimed most PWC’s want their resources spent foremost on promoting treatments, specifically contentious alternative treatments.

AIDS advocates have long used “not just any, but the most effective” message to achieve their goals. They focused on stories that would make the public feel AIDS affected them personally, drew sympathetic response (such as children), were credible, and would move the public to act.  Our media efforts have to become more savvy. 

Preparation and Local Involvement

Individual advocates must be involved for modern advocacy to succeed. CFS is currently low priority on the media’s mindset, and major media outlets are often out of reach. CFS stories will only be aired if they are brought to the attention of smaller, local media by local advocates. Advocates may simply pick up powerful personal stories, newswire releases or physiological research breakthrough and send them to their local editor or news source.

Recognition of opportunity is useless without both preparation and grassroots human resources. A network tying decision-makers to regional advocates is needed. With the advent of the internet, such a network of regional advocates is capable of canvassing media nationwide at a minute's notice. Researchers and media contacts will also need to be brought on board.

Private Funding

The federal government is not going to take chronic fatigue syndrome (CFS) seriously until the public is concerned about CFS.   Right now, many advocates look at the stress-related program at the CDC or the brain-central approach to CFS at the NIH, and they correctly realize that federal funding for CFS research is behind the curve, possibly harmful, and even likely to entrench public attitudes toward the illness. 

In this climate, we must channel more of our efforts into funding private research.  Pick a private CFS research foundation and work with your local support group to fund it.   Private funding must receive more attention, until public institutions are headed in a productive direction. And, when private research makes strides, we must get those findings to the public -- newspapers and TV.   Findings buried in research journals have little impact.   

Summing it Up: Persistence, Patience, and Strategy

In an award-winning documentary of an American presidential campaign, slick practitioners of modern advocacy were filmed evaluating strategy, emphasis, and message. This "backroom" savvy is the same approach that yielded results for AIDS during a trying time in the 80s. To make headway against CFS, I am convinced our age-old assumptions and “quick fixes” must give way to such modern approaches.

Modern advocacy is something support groups, advocates, and leaders should discuss. Each local community can lay a foundation for success in the hearts and minds of its local population base. Until we lay that foundation, both political victories and research breakthroughs will be slow in coming. Like Charlie Brown, we will continue to find ourselves lying on a dusty football field somewhere short of our goals, muttering at the conspiracies, redundancy, and unfairness behind it all.

Craig Maupin can be reached at editor@cfidsreport.com