Research News

Two endocrine studies seek subjects 
Researchers in Boston, Mass., and Ann Arbor, Mich., are studying the regulation of the endocrine system in fibromyalgia and/or chronic fatigue syndrome. In Boston, a study of "the regulation of adrenal function in fibromyalgia" will be undertaken at Brigham and Women's Hospital. The study involves a short hospital stay and blood sampling, and participants will be compensated for certain expenses. Subjects must be premenopausal, age 21-50, taking no medications. Contact Anne Maliszewski, Brigham and Women's Hospital, Endocrine-Hypertension Dept., 75 Francis St., Boston, MA 02115, or call 617/732-6870. 

The study at the University of Michigan is open to chronic fatigue syndrome patients as well as those with fibromyalgia. The project, described as a study of hypothalamic-pituitary-adrenal (HPA) axis dysregulation, will examine "the basal, spontaneous secretory characteristics and stimulated activity of the HPA axis in patients with FM and CFS, compared to a matched population of healthy volunteers." Subjects must meet the American College of Rheumatology criteria for fibromyalgia and/or the Centers for Disease Control criteria for CFS, be between 18 and 65, remain medication free during the study, and have no current psychiatric illness. Contact Christine Brucksch, RN, University of Michigan, 9D 702 University Hospital, 1500 E. Medical Center Drive,  Ann Arbor, MI 48104-0118, or fax to 734/936-4401.

More evidence: CFIDS is not depression
A group of U.K. researchers have found that small adrenal glands may be related to poor adrenal functioning in CFIDS patients. The researchers found that CFIDS patients had adrenal glands that were only half the size of those found in the control group; major depression patients typically have enlarged adrenal glands (up to 70% enlargement during a depressive episode). This atrophy of the adrenals is likely related to other CFIDS research findings, including the low levels of cortisol and DHEA and to neurally mediated hypotension, said the researchers. Since this was a small study and only CFIDS patients with demonstrated adrenal insufficiency were included, it remains to be seen whether this finding applies to all CFIDS patients or only to a subset of those who meet the CDC's case definition. See Scott LV, et al, "Small adrenal glands in chronic fatigue syndrome: a preliminary computer tomography study," published in Psychoneuroendocrinology 1999; 24:759-68.

Fibromyalgia proceedings, grants offered
Haworth Medical Press has published The Neuroscience and Endocrinology of Fibromyalgia, presenting a detailed summary of a special National Institutes of Health (NIH) workshop on fibromyalgia held in July 1996. The workshop brought together experts on chronic pain, neuroendocrine function and sleep research to discuss advances in their areas, with each segment chaired by a fibromyalgia investigator. Summaries of each segment are included, along with articles from selected presenters. The editor is Stanley R. Pillemer, MD, of the NIH. The 1,100-page hardcover book is available from Haworth (800/429-6784) for $31.96 plus shipping.

In other fibromyalgia news, eight new research grants have been funded by the National Institute of Arthritis and Musculoskeletal and Skin Diseases at NIH. The grants, which total more than $1.34 million, will include studies on cognitive behavioral therapy, outcomes in young women and aerobic exercise. In addition, the National Institute of Dental and Craniofacial Research has announced that it will fund a separate award for a study of fibromyalgia, depression and myofascial pain. Several other grants, which would bring the new NIH fibromyalgia grant total past the $2.6 million mark, are still pending.

Nursing journal features CFIDS
The March 1999 issue of the American Journal of Nursing featured an article explaining the nature of chronic fatigue syndrome. The article, "Chronic Fatigue Syndrome: Do You Know What it Means?" was written by Theresa Lynn Walker, BSN, RN, a clinical research associate at Parke-Davis in Ann Arbor, Mich. Walker described numerous theories of the cause(s) of the illness, reported the latest prevalence numbers and gave general treatment guidelines. The article describes a program at the University of Michigan, in collaboration with the Institute for Psychology and Medicine, which seeks to help persons with CFIDS cope with the physical and emotional pain of their illness. The Mindfulness-Based Stress Reduction Program "emphasizes meditation and relaxation to help patients tap into their mental, spiritual and physical resources" through a series of group sessions, a retreat, and reading and relaxation exercises.

The article concludes that an important part of care is "the understanding that chronic fatigue syndrme-unlike what the name may imply-goes far beyond feeling tired."

Pediatricians continue debate
The July 1999 issue of the journal Pediatrics included several letters in an ongoing debate among pediatricians about the merits of diagnosing CFIDS in children and adolescents. In response to a recent paper by Krilov, et al., two physicians wrote to raise doubts that chronic fatigue syndrome is a "a true medical and scientific entity." The author of one of the letters argued that the most significant risk in diagnosing CFIDS in children is the "nonidentification of [other] potentially treatable medical conditions," and proposes that most children with chronic fatigue symptoms have psychological/social difficulties or sleep disorders. Krilov, et al. responded to the criticism by pointing out that the constancy of associated signs and symptoms and frequent association of acute onset with an infectious illness justifies the use of CFS as a diagnosis and helps patients and their families avoid unnecessary multiple medical evaluations and procedures.

Many have MCS, study shows
According to a new study, 11.9% of Californians surveyed had symptoms of multiple chemical sensitivity (MCS), 6.3% said a physician had diagnosed them with MCS and 15.9% reported unusual sensitivity to everyday chemicals (see below for new case definition of MCS). The researchers were surprised at the commonness of this illness in the general population.

Tobacco smoke was the chemical most likely to make respondents "very sick" (7.6% of the sample), followed by cologne, aftershaves, or perfumes (1.8%). Asthmatics had the highest rate of MCS. Little variance was seen across race/ethnicity, geography, education, marital status or gender, leading the researchers to conclude that the demographics of MCS are "compatible with a physiologic response or with widespread social apprehensions in regard to chemical exposure."

An "Invited Commentary" piece in the same issue called the study ground-breaking for "bringing some long overdue rigor to the epideminology of...MCS." They also mentioned that 30-50% of people with MCS, CFIDS or fibromyalgia have at least one of the two other diagnoses. Both the paper and the commentary can be found in The American Journal of Epidemiology (1999; 150:1-16).

Diagnosis of MCS should be helped by the publication of the first consensus definition in the Archives of Environmental Health (1999; 54(3): 147-149). According to the authors, MCS is defined as: 1) a chronic condition; 2) with symptoms that recur reproducibly; 3) in response to low levels of exposure; 4) to multiple unrelated chemicals; 5) improve or resolve when incitants are removed; and 6) symptoms occur in multiple organ systems. The authors note that the standardized use of this definition in clinical settings is long overdue, given the high prevalence of MCS among Gulf War veterans.

First NIH trial for interstitial cystitis begins
CFIDS sufferers who have interstitial cystitis (IC), a persistent and often painful bladder syndrome, take note-doctors have opened enrollment for a clinical trial of oral drugs for the syndrome. The trial will use Elmiron and Atarax to treat 136 people who have IC and unremitting urinary frequency and pain or discomfort lasting at least 26 weeks. Elmiron is the only oral drug approved by FDA for IC; Atarax is an antihistimine that may reduce bladder inflammation and pain. This is the first in a series of trials that will study the action of each drug separately as well as the combination of the two. A list of centers and doctors is at http://www.niddk.nih.gov/patient/ic.htm.

Severe symptoms in teens with CFIDS
Researchers have found that when teenagers with CFIDS stand upright, in as little as six minutes they experience orthostatic tachycardia syndrome (OTS), symptoms of which include a dramatic increase in heart rate and decrease in blood pressure, and their feet can swell and turn blue.

In a new study in the August 1999 Journal of Pediatrics, Dr. Julian Stewart and colleagues at New York Medical College found that on a head-up tilt test, 92% of CFIDS patients experienced OTS and the remaining 8% fainted. In contrast to the OTS response of the CFIDS patients, in which standing caused the heart to race, the controls who fainted had a vasovagal response, in which heart rate and blood pressure fell. 

The researchers also compared CFS patients to adolescents with OTS who did not meet the CDC criteria for CFIDS. Although they had similar responses to the test, the teens with CFIDS tended to respond sooner and more often have blood pooling in their legs. These may be clues as to why the CFIDS patients were sicker than any of the other groups, missing an average of 40% of school days, while the OTS patients and controls only missed an average of 12% and 5%, respectively.