Q. How will the money be spent? A. By the very people who know the most about the most promising research initiatives in the world.
Each of the members of our scientific committee are brilliant researchers in their own right. Each is also very much aware of, and up to date on, the ME/CFS research being conducted around the world.
If practicality and efficiency are to be hallmarks of the ME/CFS Pocket Money Research Fund then little more need be done than to allow these brilliant minds to allocate the funds raised to those research projects where they believe it will yield the greatest return.
The guidelines under which they are to function are:
- Each member of the scientific committee has volunteered to serve without compensation. Their mission, as is the fund's, is to maximize the impact and effectiveness of the contributions to the fund towards the development of scientific understanding and treatment of what is commonly referred to as M.E. or ME/CFS.
- Every six months they will meet via free Internet video conference to determine whether to make an allocation at that time or to allow the fund to grow larger before making an allocation for the given period.
- When they are ready to decide upon allocations from the fund. They alone will determine the research projects from around the world to which an allocation will be made as well as the amount of that allocation.
- Any allocation to any member of the scientific committee may not exceed 25% of the funds allocated in a given period. Nor, may the total allocations to any two or more members of the scientific committee exceed 50% of the funds allocated in a given period.
The members of The ME/CFS Pocket Money Research Fund Scientific Committee are:
Dr. Lucinda Bateman, M.D.
Dr. Lucinda Bateman completed her BS and MS at Brigham Young University (BYU), attended the John Hopkins School of Medicine and returned to the University of Utah for Internal Medicine residency.
Dr. Bateman has served on the boards of the International Association of Chronic Fatigue Syndrome (IACFS/ME) and The CFIDS Association of America. She is the co-founder and current Executive Director of OFFER (The Organization for Fatigue Education and Research).
Throughout her career, her interest has gradually become more focused on the diagnosis and management of unexplained chronic fatigue, CFS/ME and FM, inspired in part by the silent suffering of her sister, Shauna Bateman Horne, who had CFS for 15 years before she was diagnosed with non-Hodgkins lymphoma in 2000 and died from complications of a stem cell transplant in May of 2001.
In 2000, Dr. Bateman opened her fatigue consultation clinic and has since evaluated more than 1000 patients with chronic fatigue. She has lectured extensively on issues relating to chronic fatigue syndrome and fibromyalgia. Dr. Bateman's goal in establishing her fatigue consultation clinic and the non-profit organization OFFER is to encourage a more thoughtful evaluation process, sharing of information with patients and medical providers, and cooperative research efforts aimed at understanding the cause(s) of CFS/ME and FMS.
Her current research projects involve her participation as a consultant to University of Utah project regarding CFS/FM biomarkers in addition to her own research involving clinical trials of drugs that modulate FM pain and related conditions.
When asked " How much money, over what period of time, would result in a major breakthrough in ME/CFS research?" She responded, "That is difficult to say. The issue is not “how much money” but how can money be directed at those who find the best answers. I guess that is why we must fund all worthy research to find the best answers."
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Dr. Derek Enlander, M.D.
Dr. Enlander was born in Belfast, Northern Ireland. He graduated to Medical School at the age of seventeen. He was offered a fellowship to Stanford University Medical School and came originally to the United States for one year. The University extended the fellowship for four years. His research subject was the relationship of Epstein Barr virus to cancer.
He journeyed to New York to become Assistant Professor of Medicine at Columbia University and then Associate Director of Nuclear Medicine at New York University (NYU). During a return visit to Belfast, he was asked by a childhood friend (SD) to help him in a then virtually unknown condition, Myalgic Encephalomyelitis (ME). M.E. had caused him to curtail his lucrative real estate practice. This spawned an interest in the disease, which further developed when a patient (JB) introduced him to Kutapressin research in Texas. By then, Dr. Enlander had opened a private practice in Manhattan, and was Physician-in-Waiting to the British Royal Family and to several members of the British government during their visits to New York.
He is presently an Assistant Professor of Mount Sinai Medical School, New York City, NY and President of the Israel Medical Research Foundation in addition to his private practice in New York City.
His current research project focuses on immunological and viral aspect of ME/ CFS. The expected focus of his next research project is methylation cycle abnormality.
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Dr. John Gow, Ph.D. (lower right) and his research team
Professor Gow currently holds the post of Director of the Centre for Forensic Investigation at Glasgow Caledonian University. He was previously Senior Lecturer, Department of Neurology University of Glasgow & Southern General Hospital, Glasgow. His training was a PhD in Molecular Genetics at St. Mary’s Hospital Medical School, Imperial College, University of London.
Dr. Gow has had an interest in CFS/ME since 1990, and has published more than 20 papers on the illness. He has also been an Editor of the Journal of Chronic Fatigue Syndrome, and past Secretary of the Melvin Ramsay Society for the Investigation of Fatigue Disorders.
Dr. Gow carried out the first whole-genome DNA microarray assay on patients with CFS/ME, and produced a complete gene signature for CFS. Using the data generated by the microarray assay, his research department is currently developing a diagnostic test for CFS/ME. Several novel biomarkers for the condition are being tested for specificity to a robust Diagnostic Test becoming available to the medical profession and to patient groups.
Dr. Gow's hypothesis was that a gene expression signature, generated by microarray assays, could help identify genes which are dysregulated in patients with post-infectious CFS and so help identify biomarkers for the condition.
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Dr. Jonathan Kerr M.D., Ph.D.
Jonathan Kerr was born in Belfast in 1963, qualified in medicine from Queen’s University of Belfast in 1987, and completed training as a medical microbiologist in 1995 at the Royal College of Pathologists. He received his Ph.D. from the University of London in 2004.
Dr. Kerr has worked as a microbiologist in Belfast, Manchester and London, taking up post as a Consultant Senior Lecturer in Microbiology at Royal Brompton Hospital / Imperial College in June 2001, and then Sir Joseph Hotung Clinical Senior Lecturer in Inflammation at St George’s University of London in 2005.
His interest in Chronic Fatigue Syndrome (CFS) began during a study of parvovirus B19 infection, which showed that a percentage of infected cases developed CFS which persisted for several years. This led onto studies of treatment of B19-associated CFS using intravenous immunoglobulin, and then to the studies of pathogenesis of idiopathic CFS using gene expression and the role of novel viruses.
He is currently involved in ongoing studies of gene expression in CFS based on study of messenger RNA and micro RNA molecules. His team has identified an mRNA signature consisting of 88 human genes which occur at abnormal levels in CFS patients. Clustering of these gene levels has identified patient subtypes with similar gene expression profiles and these subtypes have distinct clinical phenotypes. This gene work has been funded by the CFS Research Foundation, UK. They are also developing a test for genomic subtype based on SNPs, which is funded by ME Research UK and the Irish ME Trust.
His Ph.D. student Robert Petty has discovered 5 microRNAs that occur at abnormal levels in CFS patients. MicroRNAs regulate other mRNA genes, each regulating between 100 to several thousand mRNA genes, so this finding is important and is now being developed to determine the blood cells that exhibit miRNA abnormalities.
He and Dr Judy Mikovits (Whittemore Peterson Institute) have just been awarded a large grant from the NIH, USA, to study the pathophysiology of CFS, including the role of novel viruses.
When asked "What stands in the way of a real breakthrough in ME/CFS research?" He responds,
"Although there has been considerable research in this field, it is still a small field compared with those of other well-known diseases, and I believe that this has been a significant problem. This is partly because of the psychological image of the disease in the minds of doctors and scientists. This in turn leads to a situation where there is insufficient money available to fund enough important research into the disease."
To the follow up question. "How much money, over what period of time, would result in a major breakthrough in ME/CFS research?" He further responds, "As major breakthroughs require development in order that they may be properly applied, I would say that availability of $10 million, properly allocated to important biological projects, would be sufficient."
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Dr. Nancy Klimas, M.D.
"We are on the brink of identifying biomarkers for at least a few of the subgroups what we now call ME/CFS. It's a very exciting time. Particularly if one considers all that will then come from what is now so close at hand. Yet research funding is shamefully scarce." reports Dr. Klimas.
Dr. Klimas received her medical education at the University of Miami where she is currently a Professor of Medicine-Psychology, Microbiology & Immunology at the University of Miami’s Miller School of Medicine and the Miami VA Medical Center. She is also Director Director of the University of Miami/VA Gulf War Illness and ME/CFS Research Center and co-director of the Miller School's EM Papper Laboratories of Clinical Immunology.
She is former President and current Board Member of the International Association of CFS/ME (IACFS/ME); a founding editor of the Journal of Chronic Fatigue Syndrome; author of more than 120 peer reviewed articles and three books; and a member of the ME/CFS Fair Name Campaign Advisory Board.
Dr. Klimas' interest in ME/CFS began in 1986 when a patient came to her clinic seeking answers. “She had been many, many, many places and had been told the most amazingly awful things by lots of doctors” reports Dr. Klimas. “As a feminist I was very, very upset the way these doctors had demeaned these women and said the most patronizing things to them,” she said, adding, “I still find that to be true today. It’s really awful. Every week I hear stories that just are shameful.”
Her Current Research Projects include:
The “Good Day/Bad Day” study which is a search for biomarkers that can be used to predict partial relapse or partial recovery.
These biomarkers are absoutely necessary for effective clinical trials work.
A pilot study to gain an understanding of the role of two specific biomarkers in the development of ME/CFS: neuropeptide Y
(NPY) and dipeptidyl-peptidase (CD26). These peptides, formed from amino acids, regulate many physiological and disease
processes in the cardio-respiratory, immune, nervous and endocrine systems.
A Gulf War Illness Research Study, a genomics study to analyze the role of gene expression patterns in the symptoms of Gulf War
Illness as compared to ME/CFS.
When asked about the future of ME/CFS research, she responds, “I would say the genomics data is the most exciting stuff out there because the genomics data is a refreshing way to start all over in looking at things. Instead of just testing a hypothesis…we can look at the entire human genome – at everything the genes know how to code for - and see what’s different between ME/CFS and healthy people…Then we can go back and see if it fits any of the other hypotheses - or did we learn something new?”
She goes on to add “Genomics gives us the potential to subgroup people very accurately into physiologic subgroups that would be potentially responsive to treatments, which takes away this mess we’ve had of lumping everyone together and then being surprised when a therapeutic approach fails to pass clinical trials level standards."
"The combination of the viral research going on here and elsewhere, as well as the immune and genomics research we have underway, is very encouraging. Directed therapies are going to be studied, and those studies are going to result in effective treatments."
When asked "What stands in the way of a real breakthrough in ME/CFS research?" "Money." She said simply. "I would guess about $10 million over the next five years, maybe a little longer for clearly focused international research.
Every donation, no matter the size, takes us closer to understanding and treating ME/CFS.