Rainbow at shoreline

The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

Peppermill Resort, Reno, Nevada, USA

12-15th March 2009

I was privileged to attend the IACFS/ME 9th International Research and Clinical conference from 12-15th March, 2009 in Reno, Nevada. Attendees from all around the globe were present and much lively discussion ensued following the papers presenting the latest cutting-edge research.

Fatigue

The main conference opened with an invited lecture from Yasuyoshi Watanabe, (Osaka, Japan). He spoke on the importance of Fatigue Science for Human Health. He told us that fatigue is an important bio-alarm, without which we might lapse into unrecoverable exhaustion, or even die. Fatigue is strongly correlated with motivation.

Fatigue decreases efficiency, and scientists are extensively analyzing the causes of fatigue, looking at therapy to aid recovery and preventative strategies. Of fatigue-related illness, 30% suffer from Chronic Fatigue Syndrome in Japan, of which 1.3% are children.

Other main causes of fatigue are other organic illnesses (28%), mental illness (30%), drug side effects and the effects of surgery. The Japanese have developed a new questionnaire and a fatigue scale. Much research is occurring in Japan with the development of large new centers.

Dr Watanabe then focused on Chronic Fatigue Syndrome (CFS), discussing potential immune, biochemical and endocrine biomarkers. Plethysmography, visible and near infra-red markers for analysis of serum samples, gene expression and APISST (which relates to cytokine signals) are all being researched. HHV-6 has been found to be physiologically increased in saliva after hard work, with levels improving after holidays.

There are increases in HHV-7 also after hard work and slightly less so in CFS. HHV-6 is directly shed into the saliva, while HHV-7 is amplified in the peripheral T cells.

Brain function is studied using PET, functional MRI and MEG. Areas of the brain associated with fatigue, pain and attention have been demonstrated. Other CNS abnormalities include: abnormal acetyl-carnitine levels in PET scans, reduced binding potential of 5HTT, mood changes shown to relate to the dopamine system, visual task activity lower in CFS on fMRI, and on MRI morphometry, there was volume reduction in the prefrontal cortices. This latter may relate to cortical plasticity, as it improves with CBT.

Work with animal models was discussed, looking at physical and mental fatigue, infections and complex tasks. In general there was shortage of energy for repair, changes in genes and amino acid changes with fatigue.

Notice about names

The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and  Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.

Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.