Washington, DC—A newly announced public education and awareness campaign by the Centers for Disease Control and Prevention (CDC) aims to convince health care providers that chronic fatigue syndrome (CFS) is real and deserves more aggressive diagnosis and treatment.

Series of studies links genes, stress, trauma, and CFS

The new CDC initiative follows several recent advances in the understanding of CFS that help establish a biological basis for the disease, CDC experts say. Most importantly, CFS patients have abnormalities in genes that affect brain activity and that mediate stress responses. The new research identified five polymorphisms and three genes which are thought to be important in the etiology of CFS. The genes are involved in the functioning of the hypothalamus-pituitary-adrenal (HPA) axis and are thought to affect the glucocorticoid receptor, serotonin, and tryptophan hydroxylate. The investigators suspect that mutations in these genes make individuals with CFS less able to fight off stress. The researchers also found that CFS patients had a higher allostatic load that non-CFS controls. The key CFS studies appeared in the journal Pharmacogenomics. ^2-6

Two recent studies in the November issue of  Archives of General Psychiatry^7,8 add weight to this theory.

In one study, researchers found that exposure to childhood trauma was linked to a 3-fold to 8-fold increased risk for CFS, and that risk increased with severity of trauma. In a second study, Swedish researchers found that patients with signs of emotional instability and self-reported stress were at a 1.72-fold increased risk for fatigue-like illness.

CDC to fund major expansion of CFS research effort

Researchers at the CDC conference announced seven new grants to build on this work.

"The campaign should bring more legitimacy to CFS, which means better care and better insurance coverage," said Erica Bial, MD, MPH, staff physician at the Fibromyalgia and Fatigue Center in Boston, based in Waltham, Massachusetts. She said that public outcry and pressure inspired the new campaign. "We have a very well-educated, motivated, and organized patient base who for so long have had to defend themselves, and I think that [the CDC] is under pressure from them," she said.

Dr. Bial is optimistic that the basic science research will translate into changes in clinical practice. "Clinical breakthroughs come from research breakthroughs, so an increase in our understanding of how the brain functions in CFS can trickle down to a change in practice," she told CIAOMed.

Recently, better understandings of underlying sleep and hormone disorders and infection in patients with CFS have altered how we approach the analysis and treatment of the disease. "Patients have been benefiting from this research in a direct and clinical way," Dr. Bial said.

In particular, doctors are choosing medications that target the HPA axis.

"This is a real illness and there is a real defect in the brains of people with CFS and in time, with a particular understanding of what these defects do, we will understand the sleep and daytime energy dysfunction seen in these people," Dr. Bial said.

Much current thinking about CFS came from a landmark study in Wichita, Kansas, conducted from 1992 to 2004, explained John O. Agwunobi, MD, assistant secretary of US Health and Human Services, at the press conference. This study put CFS on the map and on doctors' radar screens because it estimated that CFS affects at least one million Americans. In addition, the data showed that women are affected at four times the rate of men, and nonwhite women are affected at an even greater rate than their Caucasian counterparts.

This study also identified serious gaps in diagnosis and treatment. Only half of the 227 people with CFS in the Wichita study visited a doctor, and only 16% had been diagnosed with CFS. The disease also takes a serious economic toll—costing an estimated $9.1 billion annually in lost wages.

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