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Advocacy Ruts -- Introduction -- A Halftime Reevaluation of CFS Advocacy

By Craig Maupin at

I enjoy watching sports on the weekends. The fall season springs to life when football season begins. The bands, the pageantry, the emotion of the athletic battle resound throughout the stadium.   Football is real life drama, unfolding on a real-world stage.

I remember an evening game between two football teams.   One team, helmets glistening, jogged out of the locker room into the lights. They appeared loose and businesslike. Their coach gathered them on the sideline and began outlining their game plan. The fans, while respectful, hardly seemed inspired.

The other team was not so restrained. They ran onto the field through a backdrop of faux smoke, lights, and blaring music. They pumped their fists, smashed each other on the helmets, and did a fashionable dance at midfield.  Finally, their coach gave them a rousing speech on the sideline, which was capped off with a collective chant. Their entrance was very inspiring.

Then the game started.  The passionate team exuberantly overran a screen pass, resulting in a fifty yard gain for their opponent.   Then, they angrily overreacted to minor setback by picking up a personal foul. They failed to execute tackles, and their players -- though quick and energized -- always seemed to be in the wrong place at the wrong time. 

Meanwhile, the business-like team spent most of the first half implementing a thoughtful strategy. They played under control, executing each play to perfection.  The stadium grew silent. Their coach seemed calm, even when his team hit a small setback via a fumble.   His mind was always making adjustments, emotionally even. In the locker room, his staff and team discussed how they could improve in the second half. Improve they did. The rout was on.

The winning coach had recently installed a modern, up-to-date offense. He had passion and commitment, but he also had strategy. He constantly examined his approach, paying special heed to his players’ skills, weaknesses, and circumstances, as well as to his opponents’ flaws.

Advocacy is much the same.   Like football, technique and strategy are important.   Advocacy approaches must be re-evaluated to ensure they are updated, credible, and pragmatic.   To be effective, advocates must continually refine and adjust our strategy as times and circumstances change.   Each situation is different.   What works for one issue, like AIDS or cancer, may not work for CFS.

The face of advocacy is generally changing.   A modern approach has shown its capacity for reaping powerful returns. In the last 30 years, there have been stunning advocacy turnarounds for illnesses like AIDS and breast cancer. Opportunities come rarely; effective advocacy anticipates their arrival and opportunistically capitalizes on them.

This series, Advocacy Ruts, is about CFS advocacy.  CFS advocacy needs a custom-tailored game plan. If our advocacy efforts look, sound, or appear like advocacy efforts for other diseases, our efforts may not generate the same results.  Because CFS is a disease that is unique, it will require an advocacy approach that is also unique.

It is my hope that this series generates much discussion.   Currently, the state of affairs for chronic fatigue syndrome (CFS) advocacy has not changed much. We struggle with funding, public apathy, and many PWC’s are falling through the safety net. Some of the causes of these problems are external. We cannot change them directly. But to make headway, those external problems must be influenced indirectly by us --- through our advocacy efforts to change public perceptions.  At a time like this, perhaps we need our own locker room brainstorming session. I hope Advocacy Ruts will be a tool to that end.