Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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President's Message.... No not that one.... this one....

Discussion in 'General ME/CFS News' started by Firestormm, Apr 6, 2012.

  1. Firestormm


    Cornwall England
    6 April 2012: 4 hours ago posted on WPI Facebook:

    'President's Message

    Dear Friends,

    Although the institute has only been fully operational as a translational research institute for one year, it has already achieved two of this fields most important milestones, confirming the critical need for additional research funding by educating the world about the severity of neuro-immune disease and opening the first medical research institute dedicated to neuro-immune disease. Both have been achieved despite having to overcome many obstacles.

    The first milestone was to bring awareness to the world that ME/CFS is a very real and seriously debilitating disease affecting tens of millions of people around the world. By making a significant commitment to the creation of a dedicated home for diseases such as ME/CFS, Gulf War illness and atypical MS in the state of Nevada, the world began to see these diseases from a new perspective. The significant levels of private and state funding made a statement to the world that these diseases are being taken seriously and deserve increased attention through research and discovery.

    The second milestone was the opening of our new state-of-the-art research and medical facilities. This 15.5 million dollar institute within the much larger Center for Molecular Medicine (CMM) took years of hard work, hundreds of individuals, and a major financial commitment from private donors, the State of Nevada and the federal government. Now, researchers, doctors and many others have begun the work to bring novel discovery and effective treatments to millions who are without answers. We realize, however, that research is not a straight or easy road to travel, as we learned from the story of xenotropic murine leukemia virus-related virus/murine leukemia viruses (XMRV/MLVs).

    The possibility of a retrovirus being associated with ME/CFS brought many outstanding researchers to this field. Many have continued to work in this area despite inherent difficulties that have been encountered along the way. Those difficulties have taught us all to be more circumspect when making discoveries, but have not dampened WPIs will to understand the roll pathogens play in this and other similar neuro-immune diseases. Giving up the pursuit of knowledge is not an option when so much is at stake for so many.

    We have learned that those who continue to persist in the face of difficulty most often succeed. Although there will always be those who remain skeptical, there are millions more who believe in our vision and who are counting on WPI to find the answers to their illness. We are thankful for the individuals who celebrate our successes and encourage us when we fail. They are the ones who make it worth the sacrifice and hard work and give us the courage to continue the search for answers.

    WPI scientists have followed an ambitious agenda surrounding the fundamental discovery of biomarkers of disease. Dr. Vincent Lombardi was recently named the principal investigator of the institutes 1.5 million dollar National Institutes of Health (NIH) grant. The last two years of the grant will be geared towards immune dysregulation and genetic susceptibility in those with ME/CFS. Immune dysfunctions in those who suffer from ME/CFS is an area of science that Dr. Lombardi has been studying since his graduate days at Temple University with Dr. Robert Suhadolnik studying the antiviral RNaseL Pathway. In addition, he and Svetlana Khaiboullina, M.D.,Ph.D., have developed a similar set of experiments to create a better understanding of the pathogenesis of Gulf War illness under a four hundred thousand dollar, two year, Department of Defense grant. We are proud that both granting agencies have given high marks to the WPI research team.

    By working with experienced researchers from virology and immunology to bioinformatics and enjoying the use of high tech research tools at the University of Nevada, the institute has created a valuable synergy between it and University researchers. To bring even greater capacity to our work, WPI and the University are pursuing next generation sequencing at the genomics core of the University. This highly technical equipment promises to create a vital mechanism for rapid discovery and quicker translation to more effective patient treatments.

    One of the most difficult challenges that we face in this field is the lack of effective research-based treatments. In addition, there are too few doctors and too many different opinions of what constitutes appropriate treatment. Working closely together, physicians and researchers at WPI are dedicated to translating basic research to practical treatments for patients.

    Our dream to find answers for patients who suffer from neuro-immune disease is well underway. However, efforts to prevent disease, develop diagnostics and provide new treatments are costly. WPI is proud to have encouraged other groups to join us in this effort. If we are all to succeed, the United States government and the ME/CFS community are going to have to increase their support of health and medical research. We are grateful to our many supporters who have been highly successful in helping us fundraise over the past two years. In 2011, we were fortunate to raise a total of over $500,000.00 from the I Hope You Dance gala, corporate donations, online campaigns such as Vivint Gives Back and Chase Community Giving, and individual donors in support of the institutes important work. Results of our work have inspired new federal research grants and the establishment of several research foundations.

    WPI is growing and thriving despite universally difficult financial times. We are adding expertise and leadership to the institute in a responsible manner as we grow and mature. We are truly grateful for the support of our government and our donors each year. We thank all of you for being a part of the WPI family and know that when you see what has been achieved and understand what can be achieved in the future, you will take pride in the role that you have played in our success.


    Annette Whittemore
    Founder and President

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