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By National CFIDS Foundation's Medical Committee ©2008

In a bold effort to advance CFIDS/ME research in a substantial way, the NCF's Scientific Board recently voted to fund new research into CFIDS/ME and its association with a leukemic cell phenotype that it has identified in some patients with the disease.
According to Alan Cocchetto, NCF's Medical Director, "Through the generosity of CFIDS/ME patients along with dedicated physicians and scientific researchers, we have been able to obtain both bone marrow biopsy and blood samples that have provided us with a preliminary indication that problems exist in the bone marrow of these patients. By using the latest in flow cytometry technologies combined with cytogenetic profiles, the NCF has been able to advance its own theories about the disease. This has allowed us to share important data with various top experts worldwide in the leukemia field as well as those engaged in bone marrow research."

Gail Kansky, NCF's President commented, "We are going where the science takes us, plain and simple. We all know that CFIDS/ME isn't a walk in the park. If we are to take this disease seriously then we must follow the scientific trail and only research will provide the necessary answers to make a difference in the lives of patients worldwide." According to Kansky, "This grant and the research that it has been based on hasn't been formally discussed in a public forum as yet, so we will be thrilled when this and other research we have planned will be underway."

The NCF plans to issue a formal statement at a later date as to who they are funding since details are in the last stages of being finalized. What we can say is that we are funding a group abroad that has been involved in specific leukemia research. The research grant funding for this project is in excess of $100,000 with the expected research to take one year.

Since the NCF began its formal Research Grant Program, it has now provided over $600,000 in "forward thinking" and aggressive scientific grants to research investigators that have included such projects as the viral detection of HTLV-II, HHV-6A/B and Parainfluenza Virus-5 in CFIDS/ME; STAT-1 protein deficiencies and abnormalities in CFIDS/ME; ciguatoxin detection in CFIDS/ME as well as the research evaluation of the ciguatera-epitope for specific sodium channel properties. This research effort to date has allowed the NCF to carefully craft a preliminary scientific model for the disease, parts of which have been confirmed by numerous researchers worldwide.

Cocchetto stated, "Our idea has always been to utilize a systems biology approach to provide scientific answers to underlying questions of pathology about the disease. We know that the research community worldwide has provided us with a wealth of scientific information that represents various bits and pieces about this disease. However, what we don't have is a solid architectural model for the disease process itself. That's the greatest challenge but it carries with it the greatest reward because once you better understand the disease process itself, then you can
begin to search for applicable therapies."

The NCF suggests the following analogy. Picture if you will thousands upon thousands of car parts layed out on a field of a stadium. From the stands it probably doesn't look too pretty but from the ground it looks like total chaos. How do you put the parts together as they are meant to go together? The NCF has been desperately working on an architectural model of the disease process that must take into account both the view from the stands as well as that from the ground. Though it is a massive undertaking, we do believe that we already have some major pieces of this challenging puzzle and that is why we are moving to fund specific leukemia research, the likes of which has never been done before, not even by the Leukemia-Lymphoma groups.

Dr. Jonathan Kerr, from St. George's University in London, recently published a gene expression paper on patients with CFIDS/ME [1]. According to his paper, the top expressed genes identified and found to be abnormal were those that were associated with hematologic disease! At this point, the NCF firmly believes that continued research will greatly assist us in our understanding and will ultimately lead to appropriate therapies for CFIDS/ME.

1. Gene expression subtypes in patients with chronic fatigue syndrome/myalgic
encephalomyelitis; Kerr JR, Petty R, Burke B, Gough J, Fear D, Sinclair LI, Mattey DL, Richards SC, Montgomery J, Baldwin DA, Kellam P, Harrison TJ, Griffin GE, Main J, Enlander D, Nutt DJ, Holgate ST; J Infect Dis. 2008 Apr 15;197(8):1171-84.

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