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A Brief Look Back

By Alan Cocchetto, NCF Medical Director

From Spring 2012 Forum

I had been reminiscing the other day with several other fellow CFIDS/ME patients about the NCF's research activity. Fortunately, these patients gently reminded me about how far we had all come on this reluctant pioneering journey together.

Ten years ago, the foundation began its formal research grant program. Prior to this period, the NCF had donated to the individual efforts of several researchers who were working on various discoveries related to their scientific interests and medical background. One such example from these early efforts was with the late Dr. David Streeten who was an endocrinologist with the Department of Medicine at the State University of New York Health Science Center in Syracuse. Dr. Streeten was considered to be a world expert in the area of orthostatic hypotension, a frequent characteristic seen in CFIDS/ME. Dr. Streeten's first patient was a long-time follower of the NCF. Certainly much knowledge was gleaned from those early experiments.

In those early days, the NCF tried to cover everything from soup to nuts… or in other words, coagulation to infections as best as we could. This approach gave way to a more formal and organized system for applying for grant money for research. Ultimately however, systems biology prevailed and the NCF chose to direct its own research efforts through its own medical discoveries. Thus, we began the road less travelled.

Back in 2002, the first major grant was directed to Dr. Yoshitsugi Hokama, pathologist at the medical school at the University of Hawaii. This research began because of the previous efforts of Dr. W. John Martin, pathologist with the University of Southern California. Over time, Dr. Hokama's work evolved, via additional grants, over the next eight years. To date, as a direct result of Dr. Hokama's efforts, over two-thousand patients have been tested for ciguatera reactivity using the ciguatoxin monoclonal antibody. In addition, numerous medical publications and presentations have been made associated with this research. As a result of this multi-year effort, several spin-off grants into myelodysplasia, leukemia and DNA damage have emerged.

In 2003, Dr. Donald Carrigan and Dr. Konstance Knox, from the Institute for Viral Pathogenesis in Wisconsin, were funded for research into the role of STAT1, a key protein responsible for host innate immunity, in CFIDS/ME. This work was presented at an IACFS conference. In addition, their findings were independently confirmed by Dr. Robert Suhadolnik, a biochemistry professor, from Temple University in Philadelphia, who worked with the NCF on this project.

A couple of years later, Drs. Knox and Carrigan received a grant for a potentially new infectious agent in CFIDS/ME. This research was aimed at examing patient samples for zoonotic Parainfluenza Virus-5 (paramyxovirus) infections and was based on the previous research completed by Dr. Steven Robbins from Australia. This wasn't the only infectious agent examined by the team. In fact, Drs. Knox and Carrigan have assisted the NCF with previous projects that included research into the roles of HHV-6A/B and HTLV-II in CFIDS/ME. The HTLV-II research was built upon the previous research work undertaken by Dr. Elaine DeFreitas from the Wistar Institute in Philadelphia.

In 2006, the NCF contacted Dr. Robert Lamb and Dr. Curt Horvath, both virologists at Northwestern University, to assist the foundation with its research that revolved around Parainfluenza Virus-5 (PIV-5) infection and its direct effect on STAT1. A transgenic mouse model was used to delineate specific mechanisms associated with these infections.

In that same year, Dr. Derek Enlander, a physician from New York city, had received a grant for his collaboration with Dr. Jonathan Kerr, a clinical instructor at St. George's University in London, on gene expression in CFIDS/ME.

In 2008 and 2009, the NCF moved into funding several specific leukemia-based studies that were aimed at the inhibition of the development of myelodysplasia and acute myeloid leukemia (AML). This extensive work was carried out by Dr. Hany El-Shemy, a professor of biochemistry at Cairo University in Egypt and Dr. Tsvee Lapidot, a professor of immunology at the Weizmann Institute of Science in Israel. Both of these grants were two years in duration and covered much technical ground since they involved the use of drugs and other compounds to block the hematopoietic problems associated with these endpoints. Some of these results are forthcoming. Also in 2009, the NCF funded Dr. Harry Davis, professor of biochemistry at the University of Hawaii, to screen for cyanobacterial BMAA and other toxins in patients with CFIDS/ME.

In 2010, the NCF funded Dr. Vitaly Citovsky, professor of biochemistry and cell biology, at SUNY @ Stony Brook. Dr. Citovsky's research revolves around the relationship between cyanobacteria, toxin release and agrobacterium. This work is nearing completion.

In 2011, the NCF recently funded Dr. Henry Heng, professor of molecular genetics at the Wayne State University School of Medicine. Dr. Heng will be using SKY analysis to look for chromosomal abnormalities in CFIDS/ME patients. This type of DNA damage has never been assessed for this patient population using this latest technology.

The NCF has made significant contributions towards increasing our knowledgebase for this disease by directing over $1.2 million dollars in research grants. We are convinced that we will get to where we need to go but it can only happen via patient contributions. Please continue to help us so that we can help you! We have proven to be good financial stewards. We have also proven that we are thinking out-of-the-box to get to a solution as expeditiously as possible. Thank you for helping us to reach our final destination that will help us all!

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606