Day Four: Research & Clinical Conference (March 15, 2009)

The final day's morning session delivered one overview and seven new studies on Research Developments in Genetics. Cutting-edge approaches like gene polymorphism studies, microRNA expression, genome-wide association studies were combined with other sources of biological data, such as viral titers and cytokine levels. Clinical information about symptom severity, duration of illness and onset type, was added to build new “fingerprints” for CFS. While each of the seven studies used different techniques, platforms and case selection/subgrouping criteria, it seems reasonable to expect that there will be continued progress to help identify CFS-specific abnormalities, as well as contribute to hypothesis generation and testing in other approaches to research. After the individual presentations, Dr. Klimas stimulated the panel with a recommendation for all the groups working in this field to share data and agree upon some common practices to make results more comparable. This generated considerable discussion and some debate; however, there was agreement that more collaboration would enhance ongoing and new studies. Apparent during the discussion was the different perspectives held by the groups studying genetics in post-infection CFS. The group from Australia reported that regardless of the agent that causes in the initial acute illness, “the patients look more alike than different” (Andrew Lloyd). However, the group from London believes that the type of infection will lead to different immune response signatures (Jonathan Kerr).

A short but interesting session on the brain and cognitive function followed. A most intriguing study from Harvard showed that rigorously selected CFS patients were clearly distinguishable from depressed and healthy controls using spectral coherence EEG data. Presenter Frank Duffy, MD, concluded, “These data are in accord with much previously reported data indicating that CFS is a condition that causes objective, measurable perturbations in central nervous system function.” He suggested that if replicated, these EEG data in combination with other brain imaging techniques might be diagnostic for CFS. A study of adult cognitive performance by Elke Van Hoof of Brussels showed slow processing speed, as has been reported by several other groups, lower performance on tasks which require complex processing, and CFS subjects’ need for more time to complete reaction-time related tasks. Reporting results from an Australian study of adolescent and young adult CFS patients, Laura Younis found that subjects had similar performance to healthy control subjects; however, she suggested that the laboratory setting and patients’ motivation to do well on the test might not make it an appropriate surrogate of cognitive performance on day-to-day tasks. Dr. Dikoma Shungu, another of the Association’s funded investigators, reported the negative results of a comparison of GABA levels in the brains of CFS patients compared to healthy controls and depressed subjects. His group’s work continues, using magnetic resonance spectroscopy to identify useful biomarkers of brain chemistry in CFS.

The final session of the day was dedicated to the group of Japanese researchers working under the impressive leadership of Dr. Yasuyoshi Watanabe at his centers in Osaka and Kobe. They made five presentations on their guiding model of CFS and fatigue as a “bioalarm” similar to fever. They also reported on foods identified to have anti-fatigue properties, nutritional approaches to combat fatigue, measures of autonomic dysfunction, and the pathophysiology of CFS in children. They reported the following to be helpful:

• CoEnzyme Q10, a nutritional supplement that may help with energy metabolism
• Applephenon, an extract from unripened apples
• Imidazole dipeptide, an extract found in animal muscle that is available in Japan in a beverage called CBEX Drink (for “chicken breast extract” drink – yummy!)
• Crocetin, a substance obtained from crocus flowers
• Bathing in a “micro bubble” streaming bath with water that streams from the ankles to the trunk while sitting in a position that submerges the shoulders and arms, knees bent
• Combining rice with omega-3-rich fishes
• Supplements of zinc, copper, manganese, and vitamins B6 and B12
• Maintaining a normal biological rhythm by avoiding bright light after midnight and restoring a healthy sleep/wake cycle that follows night/day (especially important in children)

Harvard’s Dr. Anthony Komaroff delivered a 45-minute summary of the presentations he felt were most significant of the 170 studies presented in oral or poster form over the three-day research program. He broke the highlights into these eight topic areas:

• Diagnostics and biomarkers
• Post-infectious fatigue studies
• Infectious agents
• Role of stress
• Links to other diseases
• The Brain
• Cytokines
• Treatments

I look forward to Tony’s summary at every meeting and a few years ago began trying to predict how he would frame the overview. My topics lined up closely:

• The Brain
• Testing CFS patients under challenge (exercise or another stressor)
• Triggering agents
• Subgrouping by biological measures
• Mitochondrial dysfunction
• Balancing the sympathetic and parasympathetic functions of the nervous system

Outgoing IACFS/ME president Nancy Klimas indicated that Tony’s summary will be posted to their website, although she did specify a date by which that would happen. We’ll keep you posted. When I have revived a bit from attending the meeting, I will share an overview by the six “highlight” themes I observed during the conference.

I hope these reports and the photos have given you an adequate sense of the meeting and that you’ve enjoyed the Facebook connection to the action in Reno. Each time I attend a meeting like this, I am humbled by the honor to represent those who can’t participate in person. Suzanne shares that feeling. I’ve enjoyed sharing my observations and trying to impart a flavor of the meeting and organized social activities through the Association’s Facebook profile.

Stay tuned for more from Charlotte and other points as the Association continues working to solve CFS!

Kim McCleary

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