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 sprints swiftly forward. But just as he 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 a fanatical 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. Understandably, they do not believe our traditional advocacy patterns will succeed. Weary from years of little progress and the usual strategies, many have simply given up hope. These retired advocates have come to believe that advocacy for CFS simply doesn’t work.

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 popular concern. They knew that if the public believed AIDS was not personal or severe, then the political realm would reflect that indifference. 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 public attitudes.

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, but when they do, powerful changes will occur politically and socially.

Traditional advocacy merely follows a formula that is applied to all issues: write your congressman, yearly ask for more funding, shake hands, and occasionally protest. This has a limited impact, but modern advocacy attempts to influence many players in an issue’s future. It customizes its approach, using a simple message crafted to each issue’s unique strengths, liabilities, and needs. It uses modern tools that possess exponential power. This modern approach to advocacy fits our situation to a “T”. Here’s why:

1. Affordability.

The CFS community is economically devastated. Even so, financially struggling CFS advocates can make a tremendous contribution. Advocates and support groups can initiate free coverage in local papers and airwaves. If done well, this coverage can bring about a change of heart about CFS in their local community. The long-term effects of that change will be both financially and personally favorable. Finally, private fundraising success is often a product of public attitudes.

2. Modern advocacy can address specific concerns and liabilities.

Right now, CFS advocacy is in a precarious position. A small group of government-supported "experts" push the idea that CFS is caused by patient fears, avoidance, and misperceptions. This continues despite the discovery of objective laboratory evidence to the contrary. Sadly, this problem is having a devastating effect on how CFS is treated by government, clinicians, families, and communities.

These special interests have often fed on our advocacy. Public funding victories for CFS research and education have often been used to promote their beliefs. Meanwhile, our resources and energy sometimes simply give them angry publicity and attention. Our critics do not fear more attention, protest, or even generally increases in CFS funding. To them, a bad morning is when they awake to see credible, potent personal stories and objective research findings hitting the public print and airwaves.

In the U.K., children with M.E. have been taken from their families and forcibly placed under psychiatric treatment. Such credible personal stories, if accompanied with recent breakthroughs in immunological and circulatory research, could have had a powerful effect.

In the U.S., much future CFS funding will now be controlled by a women’s health agency. Modern advocacy can raise powerful public questions if this agency should decide to support those who believe women’s illnesses are a manifestation of misperceptions and maladaptive behavior? Modern advocacy can creatively turn liability and misfortune into progress. It is very powerful.

3. Exponential gains.

Envision an issue-oriented story being read by 80,000 people. Many of these readers will become future players in the issue: researchers, politicians, clinicians, and journalists. In fact, new legislation is often a response to media coverage, rather than lobbying. Only when hearts and minds are affected by something they see or read will we see change. Modern advocacy brings change now.

4. If public is not concerned about CFS, traditional forms of advocacy will have limited or mixed returns.

There is a cardinal rule. If the public lacks concern, the political world mirrors that indifference. We should not expect our political goals to be achieved until the public fears and respects CFS. Only then will we see more consistent political outcomes.

Much of our advocacy efforts have focused on worthy, yet lofty, goals: a cure, a name that will steer research and public attitudes in a more favorable direction, more treatments, and more funding. These goals will be hard to achieve before a table is set. For example, in the early 1990’s CFS advocates cheered the creation of three new CFS research centers. After the cheers died, one center in Seattle took that money and enthusiastically plowed it into a perception-based model that emphasized maladaptive thoughts and behaviors. Another center invested their money in immune related and circulatory research. We reached our goal or “more funding and research”, but the realtime results simply reflected a great divide in public attitudes toward CFS. Our advocacy should emphasize addressing public attitudes first, then focus on "what" rather than "how much" is being funded. Traditional advocacy does neither.

Modernizing CFS Advocacy - A Short List

Changing our Emphasis, Investment and Philosophy Our energy and our limited financial resources have often been invested on traditional approaches with limited returns, rather than modern advocacy. 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.

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?' 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.

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 decisionmakers 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.

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