Letter to francis collins
Andrea Whittemore urged us to send letters asap to Dr. Collins and Dr. Fauci. The time is now- they are being read. I will send to Fauci shortly. Let's all please send respectful letters and capitalize on the moment.
Dear Dr. Collins,
I would like to thank you for the important international XMRV conference at NIH last week. It is encouraging as a CFS patient to see this matter taken seriously at the highest levels of Government. Your attendance and commitment signaled a new day of hope for 1 to 4 million severely ill people, and the safety of the nation’s blood supply.
The purpose of my letter is to implore you to immediately invest massive funding into CFS/XMRV research, specifically for clinical trials. In particular, I am requesting that you issue massive grants to the Whittemore Peterson Institute, who have shown an uncanny tenacity and ability to think outside the box. They have made enormous scientific strides in such a short period of time, and earned it. In your Rock Stars of Science conference, I observed you promise a NIH resource commitment to independent labs, which will offer cross-benefits to a broad spectrum of diseases. Given the WPI’s commitment to a variety of neuro-immune diseases (CFS, MS, Autism, Gulf War Syndrome), I can think of no better beneficiary.
On a more personal level, I am thrilled to see you heading the NIH. Your public sharing of your faith in the scientific community shows me all I need to know about your courage. I too have a very strong faith. In fact, along with my family, my faith has been my only shelter in my 4-year ordeal with Chronic Fatigue Syndrome.
On a Sunday afternoon in the middle of September 2006, I abruptly fell sick with what I though was a common flu. At that point I was a 34 year old, award-winning Television Writer Producer (network names). I was also a peak athlete, intensively training for years. I made a large six figure salary, and worked in a career I had always dreamed of. I was on top of the world in every way you can imagine. Being sick soon collapsed an otherwise charmed life.
Days turned into weeks, and then months, with no relief from near debilitating conditions. I suffered constant sore throats, headaches, swollen glands, a constantly fluctuating temperature, excruciating fatigue, and severe cognitive difficulties that prevented me from deciphering simple words at times. Pretty soon, I was faking my way through work meetings, when I could not comprehend simple information that was being communicated to me. That was terrifying. Worse, on days when I could muster the energy to attempt exercise, I would experience a strange explosion of symptoms 24 to 36 hours later that left me near bed-ridden. I have since learned that this condition is called Post Exertional Malaise, and is a hallmark symptom of CFS. It renders you incapable of exercise, which was my favorite activity of all.
With no clear medical alternatives available to me, I soon wasted tens of thousands of dollars on alternative treatments, which did nothing but drain my bank account. Soon after that, it became clear that I no longer had the capacity to work in the profession that I loved so much. Recently, I have been teaching High School, where the hours are more conducive to my condition. But, it’s becoming clear that I soon might not be able to endure even that schedule. The cognitive load is also more than I can handle. Yet, my personal pride has prevented me from throwing in the towel and claiming disability. However sick I am, I will contribute to this country that I love.
In a matter of a year I had lost my health, career, creative capacities, physical conditioning, ability to play sports, and any social life I had known. Worse yet, because of the demeaning stigma of a maliciously worded disease name, I have had to hide my condition from the world, in order to not be viewed as some sort of faker. Luckily, the support of my friends and family never waivered, because they have respected my tenacity and toughness from when I was a kid. In fact, they recently reminded me about how I used to brag about my superior health, and predict that when I was 50, I would look like a 20 year old. I had never been sick my entire life.
Throughout the four years of chronic illness, I have maintained my deep faith, trusting that there is a larger good that I am being shown through my horrific ordeal. Like the Biblical character JOB, I feel my mettle is being tested. To date, I know that I have passed that test, even in the midst of invisibility and near mockery from the scientific community and Government agencies, which have chosen to waste research on a psychogenesis for this debilitating physical disease, with the scant funds they have been given.
I have also heard certain researchers claim CFS is simply depression. The irony is quite striking to me. The incredible fact is that I am not depressed, when by all accounts I should be. I am hopeful and determined. And unrelenting. I will not stop til I am cured. There is a God who is watching, and he is gauging how I handle this absurd set of circumstances fate has delivered to me. And he is proud of what I have done with them. I can say that with no arrogance or exaggeration whatsoever. I have held my head high, even when I could barely walk down the street. Yet, I would be very curious to see how those who brazenly float such demeaning theories would mentally endure under similar circumstances.
Dr. Collins, from one man of faith to another, I implore you to honor the funding requests I have requested. I have turned to my faith time and again with a spirit of courage and strength, though physically very ill. Indeed, I have spiritually grown a great deal as a result. But I have carried my cross for too long. I have endured too much. There needs to be a speedy end to this road I am on. I just want my life back.
I have been frozen in time, and am approaching 39. There is still time for me to regain the physical existence I am entitled to. I know that you have the power and purse strings to fast track this research to a speedy therapeutic end. Please do.
I’ve recently observed several clips of you singing on Youtube. In each of them, I was struck by your infectious passion and love of life. This is what I want back. I want that creative joy back that is buried beneath a sick body.
Please send massive funding for clinical trials. Please massively fund the Whittemore Peterson Institute. And please say a prayer for me.
Best Wishes,
