Day Three: Research & Clinical Conference (March 14, 2009)

The format today followed the same schedule as yesterday’s session: 11-minute data presentations grouped by broad topic were followed by a Q&A wrap-up of those speakers, each of whom was asked to respond to two or three questions submitted from the audience on notecards. While this helps move the agenda along and spreads questions more evenly among the speakers, we’ve found something missing in the ability for questioner and answerer to offer clarifying points and provide more challenge to the data being presented. It’s also not possible to know what questions asked were not answered, as the speaker can choose among more questions than he or she will have time answer.

Breaks occur roughly every two hours, but there is little time between sessions to do more than attend to bodily needs. Like most casino venues, there’s no way to tell from inside the hotel whether it’s light out or dark, sunny or raining. In fact, by day three Suzanne and I both feel like we’re suffering from Induced Seasonal Affective Disorder. I can’t imagine how the CFS patients attending are holding up. The room is noticeably less well populated today, particularly this afternoon.

Enough with setting the scene! Today’s sessions so far have covered: Difficult Clinical Cases Discussed; Immunology; Assessment Issues from Biological to Behavioral; and the current session on Pediatric ME/CFS. Speakers have hailed from several cities across the U.S. and the following international locations: Stockholm, Sweden; Brussels, Belgium; Riga, Latvia; Queensland, Australia; Edmonton, Alberta; Woodville, Australia; Oxford, England; Edegem, Brussels; Bristol, England; and Osaka City, Japan.

There has been repeated discussion of the apparent inability of CFS patients to appropriately produce energy at the cellular level. This issue has popped up from time-to-time in the past, but it seems to be particularly “hot” at this meeting. Like the meeting two years ago in Ft. Lauderdale, the role of viruses and other infectious agents has been a frequent topic, with studies of various herpesviruses (Epstein-Barr virus, HHV-6A, HHV-6B, and HHV-7) and parvovirus B19 specifically. The range of findings still suggests that the ability of the human host to respond to infection may be more relevant than the type of infection, but the answer likely lies somewhere in the interface between the two. Related to this, the difficulty of obtaining reliable tests to measure for active versus latent virus limits clinical utility and the ability to develop appropriate treatment strategies. There were no new studies presented about the use of Valcyte (valganciclovir) to treat active HHV-6 and EBV infection, as many onsite here had hoped. During the first morning session on tough cases, the expert clinicians agreed that it is still too soon to tell whether Valcyte will turn out to be “worth” the $2,800/month that most patients would have to pay out-of-pocket for the drug.

Three investigators funded by the CFIDS Association of America presented studies today. Christopher Snell and Mark VanNess from University of Pacific provided data from a study of post-exertional relapse using a test-retest exercise challenge. Dr. Snell reported that a test of immune function, RNaseL, shown in earlier studies by Robert Suhadonik and others to be abnormal, was not useful in distinguishing between CFS subjects and normal controls. Dr. VanNess reported that only a subset of CFS patients was able to reproduce performance during exercise challenge when tested at baseline and 24 hours later. This was somewhat disappointing, because pilot studies of a few patients had shown all CFS subjects to have dramatically different performance on the first day when compared to test results a day after the initial test. This test may still be useful in establishing vocational disability, but it’s lucky that it hasn’t been made a requirement as some suggested after pilot studies were reported.

Dr. Gordon Broderick of University of Alberta also offered results from a study using exercise challenge to identify immune signals characteristic of CFS/Gulf War Illness. Although the funding for this particular study is from another source, Dr. Broderick’s novel means of exploring complex data sets was well-received by the audience. His conclusion was that the GWI subjects tested (whose symptoms are almost indistinguishable from CFS) demonstrated significantly different neuroendocrine-immune markers after exercise challenge.

The session on pediatric CFS currently under way underscores that kids do get CFS and it’s often more difficult to establish the diagnosis than in adults, partially due to the lack of awareness among providers who treat children about the condition and diagnostic criteria developed for youth. It may also be due to the varying presentation of symptoms in kids compared to adults. Kids with CFS miss quite a lot of school and miss out on many important social and emotional experiences due to illness.

This evening the IACFS/ME will host its awards banquet and keynote address. Suzanne will be honored for research excellence and I will post her delivered remarks and photos from the event later tonight. I know you’ll all join me in congratulating her on her achievements since joining the Association’s staff as Scientific Director 16 months ago, and during the 11 years she has spent studying CFS and contributing so much to the field.

Signing off for now from Reno,

Kim McCleary

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