Today's announcement of the discovery of the XMRV retrovirus' link to to a debilitating neuroimmune disease that affects more than one million people in the United States, Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS), is of particular personal signifcance to me, offering such hope for answers and eventual development of reliable treatment for those of us living with neuro-immune illnesses like CFS.
I will be posting more on my own involvement with this research study and why I am so excited on my personal blog in coming days (today has been a very bad day for me physcially, and I'm just not up to posting much at the moment) but in the meantime, please find out more about this amazing breakthrough research at http://www.wpinstitute.org/xmrv/index.html and be sure to read through the excelent FAQs they have posted for you there on the Whittemore Peterson Institute website.
Edited Oct. 10 to add link to my ongoing thoughts processing this news.
Other links related to this research:
NIH press release
http://www.stuff.co.nz/life-style/wellbeing/2948457/Virus-isolated-in-chronic-fatigue-sufferers
More links to come...
Showing posts with label Whittemore Peterson. Show all posts
Showing posts with label Whittemore Peterson. Show all posts
Thursday, October 8, 2009
Thursday, August 20, 2009
Will You Help Me Dance? (Chronic Fatigue Syndrome)
I've lived with a serious, disabling and chronic neuro immune illness called Chronic Fatigue Syndrome (CFS) for the past 19 years. This illness goes by many names including Post-Infectious Chronic Fatigue Syndrome, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and in the past was known as chronic Epstein-Barr virus (CEBV). You can find out more and learn the answers to questions such as, "What is ME/CFS?" or "Is it contagious?" by visiting the FAQs at the Whittemore Peterson Institute's website.
The Whittemore Peterson Institute is working hard to find both the root cause, as well as a potential cure, for CFS. They are a wonderful, compassionate group of researchers who have given me more hope in the fight against this illness than I have ever had. To help them keep moving forward, I would love to be able to purchase two tickets to their fundraising event, I Hope You Dance, on Sept. 12, 2009. I cannot afford these tickets on my own, but am asking my friends to consider chipping in to help me out.
Fundraiser tickets are $250 each. I would love to be able to purchase two, one for myself and one for my husband, so that we can attend this event and learn more about the ongoing strides at WPI. I'm asking you to consider helping me earn my way this benefit with your donation of even a dollar or two. For each person who helps me out with $5 or more, I will enter your name/email into a drawing for $30 in free products from Affordable Mineral Makeup™. If you can send me $10 or more, I will enter your name/email in a drawing for a Flower Bead Set necklace and bracelet from Gurrlie Girl ($68 value; or you may specify that you would prefer 2 entries into the makeup give-away if you would prefer). Any gift of $20 or more will get you entered into both drawings!
Whatever I can collect from this little drive will be donated to the Whittemore Peterson Institute even if I don't reach my ticket purchase goal, so ever little bit helps!!! Today it's a struggle even to walk, sometimes I'm in a wheelchair or simply in bed. Riding a bike just to the end of my block is no longer an option. Swimming is too much for me. Climbing a flight of stairs is overwhelming and leaves me breathless, wobbly and in pain. But I have hope that someday I will have a body that functions as it should again, and then I will be able to dance! Will you help me?
The Whittemore Peterson Institute is working hard to find both the root cause, as well as a potential cure, for CFS. They are a wonderful, compassionate group of researchers who have given me more hope in the fight against this illness than I have ever had. To help them keep moving forward, I would love to be able to purchase two tickets to their fundraising event, I Hope You Dance, on Sept. 12, 2009. I cannot afford these tickets on my own, but am asking my friends to consider chipping in to help me out.
Fundraiser tickets are $250 each. I would love to be able to purchase two, one for myself and one for my husband, so that we can attend this event and learn more about the ongoing strides at WPI. I'm asking you to consider helping me earn my way this benefit with your donation of even a dollar or two. For each person who helps me out with $5 or more, I will enter your name/email into a drawing for $30 in free products from Affordable Mineral Makeup™. If you can send me $10 or more, I will enter your name/email in a drawing for a Flower Bead Set necklace and bracelet from Gurrlie Girl ($68 value; or you may specify that you would prefer 2 entries into the makeup give-away if you would prefer). Any gift of $20 or more will get you entered into both drawings!
Whatever I can collect from this little drive will be donated to the Whittemore Peterson Institute even if I don't reach my ticket purchase goal, so ever little bit helps!!! Today it's a struggle even to walk, sometimes I'm in a wheelchair or simply in bed. Riding a bike just to the end of my block is no longer an option. Swimming is too much for me. Climbing a flight of stairs is overwhelming and leaves me breathless, wobbly and in pain. But I have hope that someday I will have a body that functions as it should again, and then I will be able to dance! Will you help me?
Wednesday, August 20, 2008
Whittemore Peterson Institute
I am thrilled to announce that the Whittermore Peterson Institute for Neuro Immune Disease has just launched their website!
According to their publication, “The Whittemore Peterson Institute’s mission is to facilitate and advance patient care, research the patho-physiology and develop therapeutics, diagnostics and prevention strategies for a spectrum of neuro-immune diseases.”
They are facilitaing research on the pathophysiology of neuro-immune diseases such as ME/CFS, fibromyalgia, atypical MS, and autism, seeking to develop therapeutics, diagnostics and prevention strategies for this spectrum of diseases, and to advance and support medical education and physician training. "The Whittemore Peterson Institute for Neuro Immune Disease exists to bring discovery, knowledge, and effective treatments to patients with illnesses that are caused by acquired dysregulation of both the immune system and the nervous system, often resulting in life long disease and disability.
"Our first goal is to work towards developing a better understanding of the natural history of these diseases, thereby diagnosing and treating patients accurately and efficiently. Generating and sustaining a blood and tissue repository and a clinical database for ME/CFS and ultimately for other neuroimmune diseases is a primary focus of the Institute."
I am thrilled to watch this world-class research unfolding right in my own city and look forward to being a patient participant in their research studies!
According to their publication, “The Whittemore Peterson Institute’s mission is to facilitate and advance patient care, research the patho-physiology and develop therapeutics, diagnostics and prevention strategies for a spectrum of neuro-immune diseases.”
They are facilitaing research on the pathophysiology of neuro-immune diseases such as ME/CFS, fibromyalgia, atypical MS, and autism, seeking to develop therapeutics, diagnostics and prevention strategies for this spectrum of diseases, and to advance and support medical education and physician training. "The Whittemore Peterson Institute for Neuro Immune Disease exists to bring discovery, knowledge, and effective treatments to patients with illnesses that are caused by acquired dysregulation of both the immune system and the nervous system, often resulting in life long disease and disability.
"Our first goal is to work towards developing a better understanding of the natural history of these diseases, thereby diagnosing and treating patients accurately and efficiently. Generating and sustaining a blood and tissue repository and a clinical database for ME/CFS and ultimately for other neuroimmune diseases is a primary focus of the Institute."
I am thrilled to watch this world-class research unfolding right in my own city and look forward to being a patient participant in their research studies!
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