By Nancy Hall at http://www.cfidsreport.com
I'm a person with CFIDS and am not affiliated with any particular advocacy organization. Each seems to have its strengths and weaknesses and all have been helpful to me at times. I am not a member of any advocacy group at this point, although I am in the process of joining a local group with no ties to any national organization.
I have had experience with political action and governmental affairs efforts on behalf a national professional association. I was a state employee for more than seventeen years, working for a bureaucracy that was bigger and more complex than those of many small countries. I served as an officer in local chapters for two labor unions and I supervised small groups of employees when I was still able to work.
It has been my observation that one of the surest ways for a group of people to sabotage their own efforts is to squabble among themselves in the presence of those in a position to help them advance their cause. In the case of CFIDS advocacy, this latter group would include members of the medical profession, scientists, government officials, the media, and the general public.
Dissent is essential to any political process, but there has to come a point at which people who are working toward common goals reach some kind of consensus and move forward. This should happen before any position statements or demands have been issued. It may require those responsible for defining a position on a particular issue to negotiate, prioritize, and compromise.
Compromise does not, necessarily, require an individual to abandon his or her principles but it may mean that someone who has been charged with responsibility for representing a larger group must develop a sense of when and how to argue a point or defend a position. Internet lists and forums frequented by members of the CFIDS community might be an appropriate forum for debate, depending on who is reading the messages posted there. Airing complaints about rival advocacy groups in public meetings and in the press, no matter how veiled the references may be, could prove disastrous.
The fact is that nobody cares as passionately about CFIDS as we do. Some doctors and scientists are interested in knowing more about CFIDS, but most are not. Some members of the general public are curious about CFIDS and empathetic, but most are not. For the vast majority of Americans, we're not even on the radar screen. Some government officials would like to be helpful, but they are working with dwindling resources and competing demands, many coming from groups with a great deal more political clout than we have.
This makes it all the more critical that we find ways to resolve our differences in private so that we can present a unified front in public. If we cannot do this, our efforts our doomed.
Nancy A. Hall