From Spring 2009 Forum

Q: Can you comment on the NCF's current research efforts?

A: We are very pleased with our progress. Since we first began our Research Grant Program, we've certainly come a long way but there is more work to be done. Our current efforts are aimed at myelodysplasia and the subsequent development of leukemia in CFIDS/ME patients. As we had reported previously, we have seen long-term patients develop myelodysplasia which is considered to be a preleukemia. Myelodlysplasia is a hematologic condition where there is an abnormal production and maturation of blood cells often leading to a deficiency of red cells, white cells and platelets… this can sometimes lead to bone marrow failure or leukemia. The NCF's own testing has led us in this direction. Even Dr. Sidney Grossberg, from the Medica College of Wisconsin, had identified early leukemia cells in patients with CFIDS/ME. Sometimes physicians comment to their patients that their white counts are reduced or their red cell counts have dropped below normal. This can be the first hint of bone marrow suppression. In advanced patients, we have seen dramatic drops in hematocrit levels which maybe indicative of anemia and/or serious bone marrow problems. Such drops can be life threatening. Likewise, in some long-term patients we have also seen an expansion it B-cells. This abnormal expansion has been associated with leukemic cell development. Fortunately, we have identified several key mechanisms that are inherent to this process and so this brings with it much hope and encouragement to continue to forge ahead.

Q: I see that the NCF has research grants with scientists from Egypt and Israel. Care to provide additional details?

A: Yes, as you can tell from our recent announcement, the NCF has moved to fund new research scientists abroad. With these grants, the NCF hopes to delineate additional mechanisms that are at play with regards to the bone marrow problems that we have identified to date. Furthermore, the NCF hope that compound screenings will yield information that should help to identify potential therapies that may be efficacious, especially to long-term CFIDS/ME patients.

Q: Is there anything that the NCF finds particularly discouraging at this time or wish that things were different?

A: I can only comment personally about this. I do wish that physicians and researchers, associated with the CFIDS/ME field, would speak as openly and candidly about their work that they possibly can. I believe that this would spawn a great deal of "interactive thinking" — something that I think is truly lacking. Coming from an engineering background, the engineering field is far more open to discussion and criticism than medicine is. I find this rather ironic because engineering and medicine are part of the larger field known as science! This is one of the true strengths of systems biology — scientists from varying disciplines working to solve complex medical problems. Unfortunately, I have come to believe that medicine is far more driven by egos than engineering ever has been and there is secrecy to discoveries made in medicine that I haven't really seen in the engineering field. In medicine, "medical architects" are hard to find. In engineering, architects are everywhere. I have always believed that if we can put men on the moon and we can bring together great minds via the Manhattan Project to develop the first atomic weapon, then why can't we all cooperate to beat a serious disease? Of course there is a big difference between cooperation and competitiveness. We must remember the human suffering that CFIDS/ME enacts on its victims — physical, financial, social, etc. This should be the only true motivation necessary to make a concerted effort in looking at causation, disease markers, viable therapies, etc. The NCF has charted its course and inevitably, other groups from around the globe will begin to slowly move in our scientific direction.

Q: If you had a crystal ball, where would you see things heading research wise?

A: The NCF has already identified the neurological component in CFIDS/ME and that is that we are dealing with an amyloidogenic disease. Protein misfolding and subsequent amyloid formation are inherent to this disease process. Dr. Hokama and his colleagues have already shared this knowledge with us. However, it's really too bad that Dr. William Reeves, who once commented at a meeting about the CDC's finding of amyloids in CFIDS/ME, doesn't comment on this fact anymore! What does this say about either the genuine honesty or cooperation of the CDC?

Q: If you were to ask those reading this for anything, what would it be?

A: Simple… we need funds to continue our research efforts. The NCF has already funded over $725,000 in research which has already paid huge dividends by laying the scientific foundation necessary to build on. I do feel that we are at the goal line and with one big push, we should be in the end-zone for a big score. Quite frankly, we are hoping to do this with a total expected expenditure somewhere around $1 million dollars… so we are getting very close to our enclpoint. The next few grants are intended to put us where we need to go. Time will tell. If the lab work goes as planned then diagnostic markers, disease mechanisms and subsequent applicable therapies will be the expected outcome… that's the goal!