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September - October 1999

Commentary
Winning at all costs

By Matthew Chute

"...It was the kind of work that almost never gets done by either the government or the universities because there is no support and no reward for doing it."
Theo Colborn, Our Stolen Future

Our medical schools produce the best doctors and researchers in the world due to the intense competition. They are literally the top minds in the intellectual game, and we benefit from their accomplishments. But the same competition that helped shape those individuals can hurt their chances of ever finding a cure for chronic fatigue and immune dysfunction syndrome (CFIDS).

Unfortunately for us, competition has become the controlling standard in the field of medical research. The best researchers are so focused on battling with each other for limited funding that they have less time to use their mental powers to solve challenging medical problems. They are often more preoccupied with sales than with science.

I can certainly appreciate the value of good salesmanship. My advertising agency has helped  companies that do not have the best product on the market sell their product as well as the best. That’s business, right? When it comes to our illness, however, "that’s business" means some research is being funded just because the researcher is a good salesman. And more importantly, it means there are other brilliant researchers who are not being funded because they are not good at selling their ideas.

Many play the game of procuring research funding to "win at all costs" based on the belief that "all’s fair in love and war." He who has the best connections has a better chance of coming out on top. I realize that there is a finite amount of money available, but is it in everyone’s best interest to play the game this way and pit different chronic conditions and diseases against one another?

It seems that more and more research is being done because of political motives (those of the government, universities, private industry) as opposed to a desire to seek the truth. Laboratory work is often aimed at confirming the answer that the party funding the research wants. Universities are becoming extensions of private industry in their desire to be money-makers and not the bastions of free thought and inquiry they were meant to be.

Small wonder that the political motives for research often have to do with profit. I wonder how much is being spent on finding a cure for baldness, obesity and other "profitable" afflictions? Obviously businesses need to make money, but it angers me that one large pharmaceutical company will spend more on advertising a new drug than the entire country will spend researching treatments for our illness.

Theo Colborn’s book Our Stolen Future is a good example of what happens when the quest for profit hinders research. It examines the impact of persistent chemicals in the environment on health, and the ramifications are threatening to many corporations. Colborn has told me about the public relations battles that followed the publication of her book. She was funded without any strings attached, but I am sure many other researchers who have uncovered public health problems have been driven out of existence by the very entities that provided their initial financial backing.

Like Colborn’s work, our illness (as well as multiple chemical sensitivities, Gulf War syndrome and fibromyalgia) may garner such criticism because there is a possibility that some industry may be to blame in part for our plight. Not to be overly cynical, but Elaine Showalter, John Stossel and others in the media who negatively portray our condition do not form their opinions in a vacuum. They answer to the CEOs and editors who do not believe that CFIDS is real or worth investigating.

So what can we do? To start, we should use our limited resources to rally public support and foster understanding about CFIDS in order to gain the kind of political support we need to get funding. We may think we have influence over our condition, but the truth is that we need others to help us out of this nightmare. That means maintaining the flow of public dollars toward our cause.

Theo Colborn is right. The most important kind of research, which is not politically motivated, is not being done. In our case, it is the job of coordinating and interpreting the wide variety of complex and contradictory information about our illness. We need a brilliant, broad-minded individual who has knowledge of the body’s many interdependent systems. Someone who understands the immune system and the environment. Someone who can seek solutions free from competitive distractions. Someone who isn’t "employed" by someone else.

I realize that this is a difficult task, but we cannot afford to leave that job to those with their own personal agendas who would "win at all costs." It’s just too costly for us.

Matthew Chute lives in St. Petersburg, Fla., where he co-owns a public relations and advertising agency, Perrone & Chute.