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Chronic Fatigue Initiative

Over lunch on that day, we had a group presentation from the Chronic Fatigue Initiative (CFI). This was introduced by Scott Carlsson. Several sites are involved and with a strong group of research scientists and clinicians. Nancy Klimas talked about the already 200 strong patient database with 200 controls for obtaining biosamples. A detailed assessment is done and there will be a biorepository for blood, urine, tears, saliva and rectal swabs. Very sick debilitated patients are included. Already it is evident that acute onset patients have a higher level of inflammatory symptoms. Females are more severely ill than males.

Gail Ironson talked about subgrouping with 4000 variables giving 18 factors associated with the main sets of symptoms. Symptom sets include: fatigue, neuroinflammation, gastrointestinal, FM, POTS, hyperlipidaemia, hypertensive, fever, NMH, increased weight. Other factors include: age/total cholesterol ratio, stress, unsteadiness/dizziness, past infection, asthma, abnormal potassium, no evidence of recent infection, hypothyroidism.

Dana March discussed clinical epidemiological aspects and the aims of the study. There are 4 main sites. They need 1000 completed surveys. They will look at changes over time. 60% patients are of sudden onset. Fibromyalgia is the commonest co-morbid condition. Deaths have been reviewed and so far cancers account for 37.8%, heart disease for 18.9% and suicide for 18.9%. Rate of cancer is higher than norms. Helpful treatments include: self-help 65%, traditional medicine 53% and alternative medicine 17%.

Mady Hornig is involved in pathogen discovery. She is collecting faecal samples to look at the microbiome. Repeat immunological profiling will be used for longitudinal analysis. She will be looking at spinal fluid etc.

Overall future directions of the CFI will include: metabolomics, proteomics, the entire microbiome, sequencing PBMCs and longitudinal analysis of immune signatures.

Tony Komaroff summarized this meeting by saying collection of data is 85% of the “sweat” and analysis about 15%. He reiterated how in such a short period of time, so much has already been achieved.

The afternoon session was interactive with case presentations by Drs C Lapp, L Bateman, R Vallings and D Peterson, chaired by Dr Klimas.