Chronic Fatigue Syndrome, or CFS, is an innocuous name given to a debilitating disease. Its seriousness is better indicated by the term Myalgic Encephalomyelitis (ME), a label preferred by many of its victims. On May 17-18, the Department of Health and Human Services hosted the biannual public meeting of the Chronic Fatigue Syndrome Advisory Committee by webinar. This was a fitting time for such a meeting, as May is International ME/CFS Awareness Month.
The trigger for CFS/ME is not known. The lack of research on the disease means there is no truly effective and widely available therapy that would allow the more seriously ill victims to lead meaningful lives free of pain and incapacitating fatigue.
The disease often appears to strike at random. It's impossible for any of us to know how to protect ourselves from the illness.
Periodically, outbreaks have occurred, well-documented in Hillary Johnson's remarkable history of the disease, Osler's Web.
Two notorious outbreaks in the mid-1980s each affected hundreds of people. One was in a prosperous community at the edge of Lake Tahoe and another in a less affluent farming community near Lake Ontario. Most victims near Lake Tahoe were adults; most near Lake Ontario were children. Today, while some of the children have recovered to some degree, many of the adults remain very ill 30 years later.
Disease outbreaks are often due to pathogens that have increased in prevalence or virulence. But no pathogen nor any toxic environmental exposure has yet been identified as the cause of the disease. Thus, the Centers for Disease Control cannot recommend any precautions one could take to avoid falling victim to this illness. CFS/ME can strike the young and old, the rich, the poor, athletes, writers, actors, film directors, journalists--whether anyone is immune is not known. In only one way is CFS/ME not an equal opportunity illness--women are four times more likely to be diagnosed with the disease than men.
The true burden of the disease is hidden from sight. The World Health Organization calculates the burden of different types of disease by a formula that takes into account years of life lost as well as years of life lived in an impaired state. Some CFS/ME patients are completely bedridden, unable to take care of themselves, even relegated to nursing homes if family caregivers are not available. Other languish indoors--the so-called "housebound," too ill to carry out any but the most routine activities. The annual economic cost of the disease in the US is over $20 billion dollars.
The National Institute of Health (NIH) spending for research on the illness has ranged from a mere $5 to 6 million a year, compared to $98 million for Multiple Sclerosis (MS), or $3000 million for HIV/AIDS. Other topics that receive similarly low funding of less than $10 million a year are a number of rare diseases, but this disease isn't rare. Estimates suggest the disease in the US is more prevalent than MS and likely as prevalent as HIV infection. Such low funding ensures that progress is very slow. Yet, the disease continues to claim new victims daily.
Certainly, some claim that increased allocation of funding for CFS/ME is not worthwhile, because there are insufficient scientists and research physicians who could carry out quality studies. And, indeed, the current CFS/ME research community is small given that few can eke out a scientific career when funding levels are so very low. Many current CFS/ME researchers are ones who have been personally affected by the illness in some way, or physicians whose attention has been drawn to this unfortunate group of patients through a nearby outbreak or compassion for their plight.
However, justifying lack of funding because of a limited supply of researchers is an unsound argument. At the time that HIV was discovered, there were only a handful of AIDS researchers--yet funding was greatly increased to study the virus and its effect on the human body, thus attracting a legion of researchers, leading to the development of effective drugs.
Some recent developments have brought hope to the many millions of individuals world-wide affected by CFS/ME. NIH has rejuvenated the Trans-NIH ME/CFS Research Working Group and assigned the Institute for Neurological Disorders and Stroke to lead a new research effort. NIH itself is even working to develop an in-house research project on the disease.
But more action is needed. Will any of the Chronic Fatigue Syndrome Advisory Committee's recommendations be implemented by the Department of Health and Human Services? Designating appropriate federal dollars for CFS/ME would attract new scientists and enable current researchers to bring to bear their expertise to solve one of the greatest remaining 21st century medical mysteries. What causes and perpetuates this serious disease? How it can be treated?
Maureen Hanson is Professor of Molecular Biology and Genetics at Cornell University and conducts NIH-supported research on Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. She is with The OpEd Project's Public Voices Fellowship at Cornell.