This report is written explicitly with people for a non-medical audience. It has been taken from Dr Bell's website, www.DavidSBell.com. A more detailed report from Dr Ros Vallings is available here.

This conference was perhaps the best ever. As before, there were two parts, a patient-oriented part and a scientific part. Both were superb. For those patients who were there, they will probably have a difficult next month trying to recover and process what they experienced, but it should turn out to be worth it in the long run.

The science is getting better and better. One presentation was the Miami erythropoietin trial. Good news and bad. First, 70% of ME/CFS patients have a low red blood cell volume. This was an NIH funded trial and solidifies the finding for use in the laboratory evaluation. The bad news is that treatment, while it brought the RBC volume up to normal, it did not help the symptoms very much. Some help to the orthostatic symptoms, but not fatigue. The meaning of this for me is what we have been leaning toward. The low blood volume contributes to orthostasis and treatment of that is helpful, but is not the prime target.

Some persons clearly have persistence of virus in their brain, particularly Epstein-Barr virus and human herpes virus-6, and treating those viruses with the right drug may be very (very, very) helpful. There is a new project starting in California that intends to find out just how many persons with ME/CFS have this virus. But here’s the problem (there is always a problem). Our local lab, and most others are hopeless when it comes to measuring for these viruses accurately. They are so bad it is not even worth doing. The good labs require cash for the testing, and it is unlikely that your insurance will cover the test at all. You would be able to deduct the cost of the test from your taxes at the end of the year, but the money has to go with the sample. This makes finding out who should be treated with the antivirals virtually impossible. Go figure, you spend $7,000 a year for medical insurance but can’t get the tests that are likely to be of help.

Lots of discussion of cellular hypoxia. This is the issue of oxygen being delivered to the cells of the heart, brain, skeletal muscles and other organs, but the process of turning the oxygen into energy is derailed. Mitochondrial, metabolic, cellular, glutathione, nitric oxide…. we don’t even know what to call this area yet. A complicated subject, and one that I would like to explore in greater detail in the office, but again, the testing requires cash up front for the laboratory tests. This is still quite new, and treatment aspects may not be ready for prime time. Dr. Paul Cheney gave a superb lecture on “Functional Hypoxia” as the keynote speaker of the patient banquet, but it may have been a little over the heads of the worn out, CFS-drained patient brains trying to eat dinner. It is my hope to attempt to translate this talk at some time in the near future.

Lots of very good talks on measuring different neuro metabolites and metabolic break down products in both ME/CFS and fibromyalgia. Tests of genes in the spinal fluid, lactate in the brain, holes in the heart, spectroscopic blips on serum samples. Good science which adds to our understanding, but not ready to become a simple test. Hang in there for another two to thirty years.

New pediatric diagnostic criteria. Very exciting. We now have an instrument that will be able to diagnose ME/CFS in children and adolescents. The instrument will be posted on the IACFS web site, and we will have it freely available in our office. Right now we are collecting data from all over the world. Next step is to publish in a good pediatric journal and make these criteria official. This is a very good science-based advance in the ability to correctly diagnose children and adolescents with ME/CFS.

The doctor-to-doctor session had a lively discussion of saline infusions, replacement of androgen and estrogen, sleep medications, environmental testing and other management issues. Very interesting, and practical.