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Winter 2000

Research News

Brain abnormalities studied
A recent paper in the Journal of Neurological Sciences (December 1, 1999; 171: 3-7) compared the brain MRIs of two groups of CFS patients: those with a psychiatric diagnosis since the onset of their illness and those without. The individuals who had not been diagnosed with a psychiatric illness showed a significantly larger number of abnormalities in the frontal lobes of the brain than those with a psychiatric diagnosis or the control group. The researchers hypothesize that the changes in the frontal lobe could explain the more severe cognitive impairment previously reported in this subset of patients.

Another recent paper about brain effects from CFS showed that patients have slowed reaction times, reduced neural activity prior to movement and poorer short-term memory than control subjects, suggesting that the central motor mechanisms accompanying motor response may be impaired. But not all of PWCs’ reactions were abnormal. The researchers from the University of California at Irvine found that neural process related to sensory perception and response to certain stimuli were unaffected. The paper was published in the November 1999 issue of the Journal of Molecular Medicine (4: 493-499).

Can recovery be predicted?
A study published in the November issue of Minneapolis Medicine has suggested that complete recovery from CFS is rare. Researchers at the Ohio University of Osteopathic Medicine mailed a follow-up questionnaire to 341 patients who became ill an average of nine years prior to ascertain "recovery" rate. Only 12% of respondents reported that they were fully recovered. However, the study did show considerable overlap in illness severity between the recovered and nonrecovered groups, suggesting that accurate prediction of recovery in individual patients is not currently feasible.

Advance in pain research
A "smart bomb" drug that can bring relief from pain without the dulling side effects of narcotics is now one step closer. Researchers at the University of Minnesota have identified a specific group of spinal neurons that are responsible for chronic pain and developed a "molecular missile" that targets those neurons and shuts them down. A paper published in the November 26 issue of Science describes how researchers isolated the neurotransmitter that allows neurons to communicate pain signals and used it to render them incapable of transmitting information to the brain. Although the research so far has only been conducted in rats, it may lead to a drug that could help people suffering from chronic pain.

Scans reveal damage in Gulf War veterans
Soldiers who believe they suffer from Gulf War Illness may have brain damage. Magnetic resonance spectroscopy scans of individuals with symptoms of the illness show lower-than normal levels of a key chemical found in the brain stem and ganglia, areas that control the body’s reflexes, memory and emotion. This suggests a loss of neurons in those areas. The researchers who presented these findings at a meeting of the Radiological Society of North America believe that the soldiers who became ill were those who had a genetic vulnerability to certain chemicals they were exposed to, such as nerve gas, the insecticide DEET and a chemical that protects against the toxic effects of nerve gas.

Respiratory infection as a possible cause
Could some individuals with CFS actually be suffering from the long-term effects of a respiratory infection? A study published in the journal Clinical Infectious Diseases (1999; 29:452-3) examines whether Chlamydia pneumoniae, a common cause of respiratory infection, could be the underlying cause in a small subset of patients. Researchers found that 10 of 171 patients with symptoms of chronic fatigue had elevated levels of antibodies to Chlamydia pneumoniae long after the initial respiratory infection seemed to be over; some had elevated antibody levels up to three years later. Those patients experienced a remission of their symptoms after a one-to two-month course of antibiotic therapy with azithromycin.

CDC orders peer review
On Nov. 15-16 the Centers for Disease Control and Prevention (CDC) asked 10 outside experts to critique its internal CFS research program and make recommendations for future directions. The panel made many recommendations for improving CDC’s investigations of CFIDS. Following are some of the most interesting.

  • Expanding CDC’s general epidemiology work to include studies of long-term effects, economic impact, quality of life, clustering of cases in families, and adolescents and minorities.
  • The name "CFS" should be changed if a scientific basis is identified. This should be considered as a component of the planned revision of the case definition beginning in spring 2000.
  • CDC should re-emphasize the search for a pathogenic cause of CFS, especially viruses and agents that are difficult to identify through standard culture techniques. New laboratory techniques can help pinpoint elusive causes of disease.
  • CDC should aggressively pursue opportunities to collaborate with other CFIDS research groups and establish a cross-cutting group at CDC to pursue research in a variety of areas.
  • The CFS research program should be coordinated by a clinically sophisticated medical officer who has trained in various CFS clinics.

CDC has said that the comments of the peer reviewers will inform its "reinvigorated" CFS research program, which it will unveil at the February 8th meeting of the CFS Coordinating Committee. We will report on CDC’s plan in the next Chronicle.

FDA OKs injectable form of kidney drug Carnitor®
By Patti Schmidt
In December, the Food and Drug Administration (FDA) gave Sigma-Tau Pharmaceuticals approval to market the company’s injectable levocarnitine (Carnitor®) for prevention and treatment of carnitine deficiency in patients with end-stage renal disease. Some people with chronic fatigue and immune dysfunction syndrome (PWCs) also take Carnitor, which is the only prescription drug approved in the U.S. to treat carnitine deficiency.

Three independent research groups have found low levels of serum carnitine in CFS patients as well as abnormalities in carnitine metabolism. In addition, a there is a correlation between higher serum carnitine levels and better functional capacity.

The cause of the carnitine deficiency in CFS patients is not known. It is possible that carnitine may not be absorbed from food in sufficient amounts, or that carnitine synthesis in the liver may be insufficient.

"Carnitine is necessary for carrying fatty acids into the mitochondria of your cells for ATP production," says Justina Lambert, corporate affairs manager for Sigma-Tau. "It is also necessary to remove waste products from the mitochondria." Clincial symptoms of deficiency include abnormalities in the muscles, heart and brain as well as fatigue.

The usual dose of the oral tablets for CFS patients is 990 mgs two or three times per day. With the injectable form, the recommended dose is 50 mg/kg given as a slow 2-3 minute bolus injection or by infusion. The company recommends obtaining a plasma carnitine level before beginning therapy.

Injectable forms of drugs are always more "bioavailable," which means your body is better able to assimilate them. Carnitor’s injectable form is 100% bioavail-able; the oral form is only 5-15% bioavailable in healthy volunteers.

A study done by David S. Millington, PhD, of Duke Univer-sity showed that the L-carnitine available in health food stores may contain less than 60% of the advertised amount. PWCs may want to use the prescription form of the drug, which is covered by most insurance companies.

One note of caution--the Carnitor labeling indicates seizures have been reported in patients without pre-existing seizure activity receiving the drug. In patients with pre-existing seizure activity, an increase in seizure frequency and/or severity has been reported. If you are at risk for seizures, talk to your doctor before starting Carnitor therapy.


Getting tested
Should your insurance company demand it, carnitine testing is available through Neogen. The complete panel costs $50; if you mention The CFIDS Chronicle, Neogen will do the testing for $25. Call Brenda or Bethany at (412) 341-8658.

Neogen will send you a kit, which includes a filter paper that you take to your doctor for processing. Results will be released to your physician.

For further information about Carnitor, visit
www.sigmatau.com. For further information about Neogen, visit www.neogenscreening.com. You can also write to Sigma-Tau Pharmaceuticals at 800 South Frederick Avenue, Suite 300, Gaithersburg, MD 20877, or call 1-800-447-0169.