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Traditional Political Advocacy in the face of Public Apathy - A Losing Formula

Advocacy Ruts - Part 3

By Craig Maupin at


No discussion of advocacy would be complete without mentioning politics. Diseases such as AIDS, cancer, and diabetes are all issues close to the hearts of people worldwide. When it comes to organized advocacy for these illnesses, political lobbying is the route most often taken. More than ever, people look to the realm of politics to solve many different problems.

Advocacy efforts for chronic fatigue syndrome have also primarily been focused on the political realm. After all, political lobbying is the most popular advocacy strategy for almost all diseases. In the case of CFS, there is no exception.

One advocate states: “To conquer CFIDS (CFS), our community needs strong, consistent advocacy where it matters most: in Washington D.C. ” He promises that, “the allocations and/or restoration of funds; the creation and promotion of advisory committees; the establishment of education and training programs;” will result in “gains for those with CFIDS.”

This form of traditional political advocacy sounds simple -- more is better --, because it is.   Political success is often gauged by numerical goals. How many votes did we get? How many letters did we swamp our congressman with? And most importantly, how much money will be spent? Success is simply measured by the government's promise to do "more".

So in reference to CFS, is traditional political advocacy working? After years of emphasizing traditional political advocacy, are the usual numerical gauges going up? Should we assume that these numerical gauges -- more votes, more funds, and more committees -- will defeat CFS? Given our current situation, are our expectations of traditional traditional political advocacy reasonable?

Political Advocacy without Public Concern. A Dangerous Formula.

The typical gauges of political success for chronic fatigue syndrome (CFS) are near empty. In proportion to the amounts spent on other illnesses, the government spends very little. Politicians rarely mention CFS. The safety net offered to citizens with other disabling illnesses can be indifferent and unresponsive to PWC’s. Amidst these problems, many feel that a continuing emphasis on traditional political advocacy will fix these disparities.

But CFS isn’t the typical illness.    Political advocacy, while necessary, is a gamble with CFS. A conflicting message is coming from our political efforts. Year after year, PWC’s complain that the government seems to do "too little". However, when the government does "do more", often the efforts are correctly cited as wasteful, counterproductive, and geared toward special interests.

This column is not a condemnation of political advocacy. Political advocacy for CFS is a necessity. Whether we like it or not, the government’s actions will greatly affect us all. If only to defend our interests, we need to remain politically engaged.

This column is about our expectations, our emphasis, and our application. For years, we have prioritized a simplistic, traditional advocacy approach -- politics.  We closely watch "how much" is spent on CFS research.   Yet, we fail to realize that it is "what" the money is spent on, and what is funded that is more important for CFS advocacy.   And we also fail to realize that "how much" is spent on CFS is attributable to public concern about CFS.   Until there is public concern about CFS, there will be little federal funding that is plentiful or effective.

Government actions mirror public attitudes…

Ask a random person on the street what his or her thoughts are about 'chronic fatigue syndrome'. You will receive many different answers. Some people are knowledgeable about CFS. Perhaps they have treasured friends and family who have been felled by the disease. They understand that CFS is disabling, painful, and serious, and physiological. They also may understand that the name is misleading and trivializing.

But chances are, you will meet many others who know very little about the illness. Some of these people will be misinformed. Some may be influenced by the benign name “chronic fatigue” and wrongly assume the illness is deconditioning or "fatigue". Others may believe sufferers of CFS perpetuate their own illness or even pretentiously feign illness for personal gain. They need to get off the couch, get some exercise, and take charge of their future.

Here is the clincher. Public apathy, misunderstanding, and attitudes toward CFS will simply be mirrored by the politicians, government agencies, bureaucrats, and researchers responsible for addressing the illness. It has been this way in the past. It is this way now. It will continue to be this way in the future. We should expect no less.

If a large portion of the public possess these attitudes toward CFS, then we should not be surprised if a similar portion of every dollar we secure is spent on researchers who reflect those feelings. Therein lies the limitations of traditional political advocacy for CFS.

At the moment, an honest appraisal of our political efforts should come to one, clear conclusion: our efforts are providing fuel to both friends and foes. Publicly funded research routinely churns out philosophical diatribes that CFS is "perpetuated" by sufferer misperceptions, stress, or trauma.   At the CDC, the agency is likely to churn out a study one week that portrays CFS as a physiological illness. Another study may portray the illness as a "regional response to stress" or one of many "fatiguing illnesses".   Two psychiatrists, experts in PTSD, were recently tapped by the CDC's director of CFS research. Should we continue to assume positive outcomes from increased federal funding for CFS?

Before we move forward, we should ask some pertinent questions. Who do we expect to be the financial beneficiary of any future political victories for more funding?  It is easy to see where government agencies who research "fatiguing" illnesses could end up taking us, without capable leaders watching over "what" and "who" is receiving funding for CFS.  Our current political efforts doing more harm than good.

Digging a little deeper

In 1993, a Temple University laboratory discovered a new, exclusive molecule in CFS patients. No media coverage ensued. A few years later at John Hopkins University, new findings surfaced on orthostatic intolerance and low circulating blood volume. No coverage. This year, a study claimed CFS cost the economy nine billion dollars . Very little coverage. For your doctors and your friends, these important findings may as well not have occurred. And regrettably, this lack of knowledge is often reflected by our government agencies.

Winning the public opinion war takes talented, charismatic leaders who have a driving desire to step onto the public airwaves and print. They must anticipate rare opportunities. They must turn what appear to be persecution and heartache into opportunities. Effective CFS advocacy must plan ahead.  Our advocacy must see opportunities in future physiological or microbiological research findings or personal stories. Opportunities come once; then they are lost.

There is no better example of an advocacy struggle turning on a dime than AIDS. Like chronic fatigue syndrome (CFS), AIDS advocacy struggled with unique problems.  Since many considered AIDS sufferers responsible for their own predicament, they did not want to lend their taxdollars to the disease. Does this sound vaguely familiar? The dire straits AIDS advocacy once faced is often forgotten amidst the recent success of AIDS advocacy.

AIDS advocates set about to convince everyone from 90-year-old, God-fearing grandmothers to swinging college students that AIDS is a dangerous public concern to all.  They knew that AIDS had to be feared. AIDS advocates knew they could protest, organize, and petition all they wanted, but until the public saw AIDS as a serious problem, they would be spinning wheels. AIDS advocacy knew where true power lay.

Today, funding for AIDS far outpaces that of other illnesses. Dollars roll in easily to AIDS charities. AIDS is on the newsstand and TV. Frequent attention to AIDS is driving political momentum. The message the public consumes is fueling a collective political desire. First, for political advocacy for CFS to yield positive outcomes, we must focus our efforts on the root of democratic politics. We haven't laid that groundwork yet, and we are seeing the results of the stagnation in low funding rates.

CFS: Our political advocacy must be specific and knowledgable

We must also be specific in our political advocacy efforts.  At the moment, there is the possibility of five future new "Centers of Excellence" for CFS research.  These centers have been requested by advocates on the CFS Advisory Committee to the Health and Human Services Department. Should we simply assume these centers, should they be built, are a victory?  

 No.  We should not assume more funding is a victory.  The CDC is increasingly spending the money in its CFS program on post-traumatic stress disorder and emotional aspects of "fatigue".   And, what will happen to people who are severely disabled when those funds produce "results" which are portrayed to the scientific community as "empirical"?

An honest appraisal of our past political efforts should only come to one conclusion. Political efforts can reinforce misinformation about CFS just as much as they can create positive momentum. A varied cast of beaurocrats now feed on the modest gains of our political advocacy. Simply asking for "more", failing to be specific or knowledgeable as to what needs funded, and hoping for the best is fine advocacy for most illnesses.  It is a dangerous gamble for those with CFS.  

 We need to fund more private research.   And we need to discuss what is funded federally as much as ask for more federal funds.

Realistic Expectations

Our expectations of political advocacy for CFS should be tempered, sober, and realistic. "More funding" -- funding in the face of public apathy and little oversight --certainly would classify as advocacy.  It is not effective advocacy. The table must be set before CFS advocacy begins to gain momentum.  To set that table, our focus and emphasis has to change -- to be specific.  How we think has to change. We have to turn the root of democratic power first, fund our own research, and get our own message out to the public.

This is a disease in which exclusive immune and circulatory findings have produced a new understanding. This is a disease where public attitudes, and even government agencies, have fostered misperceptions, apathy, and even persecution of those with CFS. The public knows very little of this. The public dollar, conceived from our political efforts, will reflect this apathy and ignorance, each and every day.  It will only change when our private efforts -- privately funded research and media -- make new headway against CFS.