I first heard about CFIDS when it was the cover story in Newsweek magazine in 1990. Like most healthy people, I gave it only a moment’s notice. But in the spring of 1991 something went very wrong with my wife’s health. We had been living with our three children in Ethiopia for a year and a half when she developed flu-like symptoms that simply would not go away. Eventually Louise’s deteriorating health would force us to return to the U.S., where she was to be diagnosed with CFIDS some nine months and many doctors after the original onset. Four years after that traumatic redirection in our lives, I, too, came sown with the debilitating illness that had seemed so distant and unimportant as a passing headline.
Now, after a futile three-year struggle to regain some semblance of health, I’ve become intrigued with questions relating to the existence of CFIDS in the developing world. While research on the illness is ever increasing, very little exists on the state of CFIDS in the non-Western world.
So I’m left wondering: If the illness is contagious, as many experts postulate, then could my wife have acquired it overseas, eventually passing it on to me? And if she did, how prevalent is the disease in developing countries like Ethiopia, that lie at the bottom of the world’s economic ladder, bedeviled by depressingly inadequate health services? And what of those poor souls that may have CFIDS but no proper medical treatment and no knowledge about the illness itself? Can PWCs even survive in the conditions that characterize most low-income countries?
Disease may be hidden
Such questions do not arise out of the idle speculation of a fog-encumbered brain. Determining if CFIDS exists in the developing world is crucial to understanding its etiology and means of transmission—inevitable precursors to developing effective treatments and, dare I say, a cure. If it exists in the developing world in any proportion that resembles its prevalence in the West, then probable cause for a contagious agent can be more firmly established, or, as may also be the case, a set of common denominators can be discovered.
Either way, issues such as Western lifestyles and industrial pollutants as prime causative factors can be more accurately determined through understanding just how widespread CFIDS is in the developing world.
There are major hurdles to such knowledge, foremost being the inability to gather reliable data outside of Western health care structures. Nevertheless, I decided it would be instructive to find out who knows what about the existence of CFIDS in the poorer countries of the world. I inquired within the relief and development agency I had worked with in Ethiopia, Food for the Hungry International (FHI).
I contacted the directors and health coordinators in eight countries in which the organization is currently active to ask about their understanding of and experience with CFIDS (or ME, as it is also called). Two of those countries were in Asia, four in Africa, and two in Latin America. The in-country personnel were both Euro-American expatriates and nationals working for the agency. Most had some background in health—from nursing to pharmacy to, in one case, a physician.
Each country contact was given the Center for Disease Control’s definition of CFIDS, which of course insists on ruling out all other organic and psychological causes. And I offered a list of questions for each to answer regarding the existence and prevalence of the illness among those nationals with whom they work. It should be pointed out that FHI typically works in poor, rural areas, although the personnel who I questioned maintain social contacts at every level of society, including high-level government officials.
CFIDS not recognized
What I found was that of the tens of thousands of nationals covered by FHI health and development programs, there are no recognized cases of CFIDS. In one country, Guatemala, I was told that CFIDS was unknown as a medical condition among health officials at the district and national-level hospitals. Official statistics at the national hospital provide no category for CFIDS, with encephalomyelitis (inflammation of the brain and spinal column) being the closest condition. Interestingly, however, of the expatriates I contacted, some knew of others with CFIDS who were forced to return to their home countries for treatment. In other words, Westerners were coming down with CFIDS in developing countries, just as did my wife, but nationals were not being diagnosed with the illness.
After giving the matter some thought, I realized that the results of this most informal survey were not surprising. CFIDS could be widespread in the developing world and not be noticed because health-care practitioners, be they Western or nationals, are not trained to look for the illness. Rather, as I was repeatedly told, such practitioners focus on the rampant, life-threatening illnesses such as malaria, AIDS, Dengue fever, and killer strains of measles. With such illnesses all too common, who has time to look for (or the money to test for) CFIDS?
In addition, the percentage of nationals who actually seek out Western medical care in their own countries is often quite low—leaving the possibility that many Third World PWCs never get beyond seeking traditional means of treatment at the village level. And then there is the grim possibility that those with CFIDS simply could not survive the harsh conditions of Third World life. How could a hypotensive, temperature-sensitive PWC fare without air-conditioning in the 115 degree Fahrenheit temperatures of a typical summer in Peshwar, Pakistan?
Finding no cases of CFIDS might seem to support the position that CFIDS is solely a developed country disease brought on by the stresses of modern life and the industrial pollutants that befoul our air, food, and water. Still, it must be recognized that poverty, malnutrition and political-religious oppression creates tremendous levels of stress with which few, if any, of us have ever had to cope.
What can be more stressful than watching half of your children die from poor health and nutrition? And as for pollutants, the Third World is full of them. Lack of adequate emission controls and a break-neck pace to industrialize make the air and water in cities unimaginably polluted. And to top it off, Euro-American chemical producers habitually dump dangerous and outlawed chemicals on the developing world. So if CFIDS is linked to stress and toxins, Third Worlders should be near the top of the list for susceptibility.
Although I doubt the proposition that CFIDS can be largely attributed to the unique stresses and pollutants in highly developed nations, I do believe that it could still be a rich country illness, but for a different reason. CFIDS could be a sort of post-industrial illness, in the sense that it emerges only after other serious communicable diseases are brought under control. Perhaps it is the result, either directly or indirectly, of the immunological breakthroughs that have brought smallpox, tuberculosis and other infectious diseases under control in the West. If so, then the same pattern might eventually repeat itself if and when similar life-threatening illnesses are brought under control in the developing world.
Research would provide clues
At some point it behooves the Western world to begin the research to determine whether or not CFIDS exists in the developing world. It could be the case that CFIDS is perpetuating other diseases by compromising the immune response of those afflicted with it. If so, it needs to be dealt with to make progress with the acute respiratory infections, diarrheas and other illnesses that too often result in death. If CFIDS does not exist in non-Western populations, then perhaps there is a genetic component providing some degree of immunity. Certain strains of malaria and the development of the sickle cell among some West African populations may be instructive in this regard. At the very least, we should investigate because there may be real people suffering just as we do, yet without any knowledge or means to help themselves and no one advocating their cause.
I know I’ve raised far too many issues in this article. My main goal, however, is simply to encourage the larger CFIDS community to expand our focus to those outside of our own national, racial and ethnic boundaries. By addressing the issue of CFIDS worldwide, not only will we be doing the right thing ethically, but in the process we might discover modalities of healing that can further help everyone in the battle against CFIDS.