Houston CFIDS Association

In today’s edition of CFIDSLink, the Association announces the hiring of a new Scientific Director to advance CFS research. This news has also been released to the national media through PRNewswire and has already been picked up by several online news sources.

CFIDS Association of America Names New Scientific Director To Advance Chronic Fatigue Syndrome Research

Charlotte, North Carolina-November 7, 2007. The CFIDS Association of America announced today that Suzanne Vernon, PhD, has been named scientific director and will lead the Association’s research program for chronic fatigue syndrome (CFS). She will oversee Association-funded research grants, foster opportunities for data sharing and collaboration among CFS researchers worldwide, and help build a framework for accelerating the pace of research through multidisciplinary, translational research.

To support these research initiatives, the CFIDS Association is announcing a new campaign to raise a million dollars over a one-year period to fuel the program. This is the largest research campaign for CFS to date in the United States.

The post of scientific director was created to enable the CFIDS Association to focus on facilitating new networks of communication and collaboration-and strengthening existing networks-among researchers doing basic science and clinicians on the front line of patient care.

Dr. Vernon has 17 years of experience as a microbiologist at the Centers for Disease Control and Prevention (CDC), where she helped identify viral markers that predict cervical cancer before moving into the CFS research group at the agency in 1996. She led the CDC’s chronic fatigue syndrome Molecular Epidemiology Program for the past decade, and her team was one of the first research teams in the world to apply human genomics and genetics to identify biologic and diagnostic correlates of CFS.

“Dr. Vernon’s CFS research background and broad skill set makes her the ideal choice for this new position,” said Kimberly McCleary, president and CEO of the CFIDS Association. “Dr. Vernon helped pioneer the application of proteomics and genomics to chronic fatigue syndrome at the CDC, and now she will help our organization pioneer a new model for speeding the progress of CFS research and translating the science for health care professionals and patients to move clinical care forward and ultimately lead to more effective treatments.”

Dr. Vernon says it’s not uncommon for there to be a huge gap between science and medicine, and that CFS is no exception. “There has been tremendous progress made by CFS researchers around the world in the last decade,” she said. “We now understand an enormous amount about the pathophysiology of CFS, and about the body systems that are broken or altered by this disease. Now it’s time to move the entire field forward by encouraging the kind of collaboration and communication among scientists that propels research to the next stage and to spearhead empiric diagnostic efforts and new treatment interventions.”

Benjamin Luft, MD, a professor and infectious disease specialist at SUNY at Stony Brook, said today, “The appointment of Suzanne Vernon as the scientific director of the CFIDS Association is a coup for both the Association and all who care about understanding and treating this elusive condition. Over the years, Dr. Vernon has been an important part of the leadership of a multidisciplinary systems biology effort at the CDC to understand the intricate dysregulation that occurs with chronic fatigue syndrome. In bringing together various disciplines from computational biology and genomics to epidemiology and clinical medicine, this work serves as a paradigm for understanding diseases that are caused by a multiplicity of factors. Ultimately, this knowledge is our best hope for effective therapy.”

Nancy Klimas, MD, an internationally recognized CFS researcher and clinician based at the University of Miami, believes this new research vision “is the next imperative step for the CFS field to help move the body of science forward into pathophysiologic and subgroup-based clinical intervention studies.” She added, “Dr. Vernon has shown a unique ability to bring experts from divergent fields together. She has tremendous enthusiasm for this work, and her compassion for patients afflicted with this illness is obvious. She is deeply respected by the scientific community, and I can think of no better choice for this important position.”

Specific priorities that Dr. Vernon will address for the CFIDS Association include:
• Leading the Association’s own research grants program, which has funded $4.8 million in research so far, to expedite progress in the search for biomarkers, treatments and a cure
• Building strong collaborations with CFS researchers across the world to identify synergies, gaps and opportunities that warrant higher priority
• Developing new opportunities for scientists to share ideas, knowledge and data to advance the field
• Surveying other fields of research for findings and scientific approaches of potential relevance to CFS
• Assisting in efforts to secure a new infusion of federal research funding for CFS
• Attracting new investigators from a number of disciplines to the field of CFS research.

I am including ProHealth Immune Support on our site because, although they sell “product”, they are PWC owned and are great advocates for CFS/ME/CFIDS.

“The ProHealth story begins back in August 1981, when at the age of 23, Rich Carson woke up one day with severe flu-like symptoms. Rich saw a specialist who ran tests for strep throat and mononucleosis, but the results for both tests were negative. Sometime later, while still feeling extremely ill, Rich spoke with an internist who informed him that he may be suffering from either a chronic cytomegalovirus or a chronic Epstein-Barr virus infection. Pointed in the right direction, Rich telephoned every researcher he could find to investigate his illness, which has since come to be known as Chronic Fatigue Syndrome.

By 1986, Rich was spending two or three hours a day on the telephone with CFS patients and researchers, and started one of the first and largest CFS support groups in the country. Rich’s determination to help CFS patients soon lead to the creation of ProHealth, Inc. Founded in 1988, the company’s mission is to provide a comprehensive resource for people with Chronic Fatigue Syndrome and Fibromyalgia.

An important part of Rich’s treatment plan includes alternative therapies that greatly relieve many of his symptoms. The Health Resource Catalog was published to share with other patients the supplements he found to be most effective. Additionally, Rich realized the Internet is a great way to spread useful, up-to-the-minute information to the many thousands of CFS and FM sufferers worldwide, and so ImmuneSupport.com was created.”

Please cut and past the following link or the link on our home page under “links” to view this informative site:

www.immunesupport.com/tracklinkexchange.cfm?linkid=1068″>Fibromyalgia & Chronic Fatigue Syndrome Resource

Patients with Chronic Fatigue Syndrome (PWC’s) have a choice to make the moment they are diagnosed. Do I give up and go to bed or do I fight? The choice is yours and yours alone but I say fight! Fight the illness! Fight the misunderstanding! Fight the medical community!

Become an advocate informing everyone you know or meet about the illnesses parameters and how it affects your daily existence. Help others understand the debilitating nature of the illness through access to both CFIDS of America’s and Houston CFIDS Associations websites. Above all, keep faith in yourself and your ability to survive.

Information is your best defense from discrimination in your life and with medical professionals.

Remember our national slogan: Get Informed, Get Diagnosed, Get Help!