A lot of the dissension here feels like the squabbling of a lively, dysfunctional family, with lots of crazy relatives:). Lately, there’s been some progress in being more respectful of one another. But this being the internet, there are strangers in our midst, trying to find chinks in our nonexistent armor. That’s fine, for we are here to look at the truth. The naysayers are an opportunity to sharpen our thinking and confront rumor head-on.
I decided to blog because I couldn’t stand all the suffering in isolation. Even as a doctor, when my family got sick and started seeing Lyme doctors, there was a feeling that there were people that knew something that I didn’t, a way in which the information wasn’t freely given. I now think that happens because of everyone’s unwillingness to admit what they don’t know, even to themselves.
My only serious concern about my outspokenness on the internet has been the recent comments that my being controversial might somehow hurt the WPI. For this reason, in part, I have elected to be a consultant for the WPI, as an independent contractor, rather than an employee. I’ll take this opportunity, in advance of an announcement on the WPI website, to say that the opening of the clinic will not take place in May as hoped, primarily because of financial constraints. Our plans remain unchanged however, and I am hopeful of opening before the end of the year.
So let’s take advantage of our devil’s advocate, John, who has questioned both the science and integrity of the main protagonists at the WPI. With permission, I’d like to tell you what I’ve learned about the institute and the people involved. In particular, I’d like to address the oft heard thread that runs something like this: the Whittemores are richer than God, so why don’t they just cough up another few million dollars to save us?
Here is the reality. At a time when money was not as big an issue as it is now, the Whittemores, and other concerned patients, joined with Redlabs, owned by Dr. De Meirleir in Belgium, to start VIP Dx. This happened at great personal expense because a clinical research lab was needed to save their daughter, and others. The “and others” make the Whittemores special. They didn’t just have the money. Lots of people have the money. They thought about the problem and applied the money in a way that no one else had done before. It wasn’t about money, but the embodiment of parental love. This all happened well before there was a research lab. XMRV as a cause of CFS wasn’t even a twinkle in anyone’s eye.
Everyone knows that Harvey and Annette spent many millions, and raised millions more, to fund an institute so that everyone would be helped. They brought together the necessary ingredients in the form of Mikovits and Lombardi. Having heard the story from each of them and others, it was a synthesis of talent, skill and luck, as genius always is. The WPI scientists support and promote each other’s contributions, a rare thing in the world of science. Also unheard of, everybody passed up any intellectual property rights in favor of the institute. Any interest in eventual profit from the use of the WPI’s intellectual property by VIP Dx was passed to the institute when it was founded.
When the Science paper was published, a lab called Cooperative Diagnostics, owned by a scientist named Satterfield, brought an unvalidated test to market for XMRV, even though they had never found it in a human being. Their test was a PCR for a VP62 plasmid. Recently, in an interview with Cort Johnson, Dr. Satterfield admitted that they never did find it in anyone. More of the “I can’t find it, so it isn’t there” insanity. I thought it pretty strange that he isn’t ashamed of having charged people a bunch of money for a test, even though he knew that he had never found XMRV in an actual patient. How can you disprove an association, if you can’t find it all?
Dr. Satterfield’s attempt to jump into the market, forced VIP Dx to bring a test to market, even though there had been no intention to do so until further research was done. But the prospect that there would be a flood of negative test results that needed to be immediately challenged forced their hand. At that time, it seemed likely that the major commercial labs would be testing soon, so it was considered a band aid for the short term.
The first 10 people who write to me that have a receipt for a negative test from Cooperative Diagnostics will be tested at VIP Dx for free. Email: jdeckoffjones@gmail.com. Also, if anyone received a positive test from Cooperative Diagnostics, I’d like to hear from you.
So testing for XMRV is a gold mine, right? Wrong. VIP Dx hasn’t even begun to pay back the original founders, nor can it cover all of its current existing expenses. It pays WPI a royalty (calculated as the net profit for administering the test) that puts it further in the red. Some of the founders donated their holdings or had their holdings placed in trust for the benefit of WPI. And Harvey, who manages the lab, has never been paid a dime. Never. The lab exists to unravel the mystery of our illnesses, as it was intended from the beginning. Here’s the truth. VIP Dx has lost almost a million dollars since inception. Not accountants fiddling with red ink, but real losses. I have seen the actual numbers. Anyone want to donate to the cause?
I can tell you that in planning the clinic, VIP Dx is just as important as the WPI translational research lab. Integral parts of a unique whole. Dr. Lombardi will make available any testing that our doctors decide we need. He is looking into the tests I have asked for, so that they will be available when we open. They recently moved into their new state of the art facility next to the clinic, a tremendous undertaking. All testing done in the clinic will go into our database, so contributes to our overall understanding of the illness and how to approach it.
So why don’t the Whittemores give some more money? Because they don’t have it at the moment. If they did, they would. In my opinion, everyone who has spent a few dollars on an XMRV test from VIP Dx is contributing to the greater good. The sooner we start to think about the illness as related to XMRV, or another related but unspecified human gamma retrovirus, the better; it will affect those we tell. Personally, I’ve had good luck explaining my illness to the uninitiated as “a newly discovered retrovirus like HIV that isn’t fatal”. We are in much better shape now, with our decisions informed by this understanding, than we were before. Understanding is everything to me. For that reason, no matter how it all turns out, I owe my hugely improved quality of life to the Science paper. I’m still sick, but living in the light.
As for Dr. Mikovits being right or wrong? She questions herself every day, as any real scientist would. Clearly, she (and the WPI) were unprepared for the thousands of desperate patients who turned to her, all needing immediate help. She is a deeply compassionate person and has trouble telling patients that the science is going to take time. She bleeds for us. A consummate scientist, not a politician, she is under unimaginable pressure, caught in the center of the perfect storm. We all owe her a debt of gratitude for what she has already given.
Finally, I have spent time in the labs of both Drs. Mikovits and Lombardi, in two different places many miles apart. They can both grow the virus. Not from everyone, but in a significant percentage of patients. I wonder how they keep contaminating only some of the samples. To John. I will address your objections 1-8, 9, 10, 11….99, 100, etc. in a future post. But it is my belief that if you use the methods, materials, and processes outlined in the Lombardi paper, in an appropriate sample, you will find XMRV. Other labs besides these two can find it. We know that there are plenty of people out there who can design and complete a PCR study looking for XMRV and not find VP62. They know, and we know, that they are looking for the wrong XMRV and using the wrong methods, materials, and processes. It is that simple.
