Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Is this mischief making (I shall employ the phrase beloved of Simom Wessely) 'par excellance'?
Either that or this post was indeed, what is known in the UK, as a 'wind up'.
It's not an attack at all. Wake up people!
I've heard the sob story about the Whittemore's, and how they're in this to help us. Maybe they have the bst of intentions, however Harvey Whittemore built his $2 billion business empire by being a shrewd businessman.
Why solicit funds if you have over $2 billion in assets? If my daugter was sick with CFS, and I had unlimited funds, I would have paid for a cure years ago...
Moderators, any chance this thread can be locked/deleted?
This person seems to have registered here purely for making potentially defamatory claims against Harvey Whittemore. The above can be easily refuted by looking on the Forbes list, where surprise, surprise Harvey Whittemore is nowhere to be found.
Just a little anecdote to share with you.
I've been living in France for 4 years now and have seen my local GP exactly three times. The reason being is that I've had 20 years of dealing with GPs in the UK and with only frustration as a result. Secondly the cliche is that the French are the world's biggest pill poppers and French GPs just love to dish out drugs. However I needed to inform my GP of my illness as he is my primary (only) medical practitioner.
The first time I saw him, I introduced myself and handed him a summary of my symptoms over the years. He read them and told me that in France, they don't believe in 'this illness' but suggested I should try antidepressants -just on the off chance. I agreed (not good to be seen refusing treatment) but told him of my reservations as I wasn't depressed and had problems with prescription drugs. A bad start and I assumed that I was dealing with the usual medical bureacrat. Second visit I gave him a copy of the WPI Science paper which at least he agreed to read. I hadn't picked up the prescription for antidepressants and told him so. He didn't seem too upset by this.
Third visit he had printed off a paper for me (in French) on Fibromyalgia and what the paper termed 'idiopathic fatigue syndrome'. I tried to explain that FM wasn't my problem. He was very adamant that I should read his paper though as it was 'completely independent of any drug company bias'. I read it and it was a meta analysis of all the commonly used pharmaceutical treatments for FM, excluding any results of studies funded by pharma companies. The results were enlightening. No compound gave results significantly better than placebo and once side effects were considered, none were recommended. The recommended treatment was that patients should try to live within their limits - in other words pacing. In return I gave him a French copy of the Canadian Consensus Document which impressed him but he was still concerned about pharma input into it. The doc then asked if there was anything else he could prescribe; When I declined he agreed saying that my body had enough to cope with without adding in drugs.
My French bureacrat GP turns out to be an anti-Pharma radical. Which is great - shows he has an open mind, BUT :
Either his English or my French is going to have to improve a lot before I can explain to him that in the case of ME - 'big Pharma' isn't the enemy. We're being screwed by governments and their agencies who refuse to take us seriously or give us any treatment. Ironically, 'big-Pharma' may be our only hope of salvation.
So I'm not too concerned over any suggested conflicts of interest as far as physiological research is concerned. If it takes the profit motive to crack this illness then so be it. Certainly appealing for understanding, justice or to peoples better natures hasn't got us very far in the past.
I understand the concept of conflict of interest. It always looks bad when someone is making money off a cause where they are supposed to look like a crusader. But what is the alternative. Harvey believed that he needed a lab to do testing as part of the WP Institute. So he bought one. Or maybe he bought this before WPI to offer CFS testing. That's what it did. What's wrong with that. Should he only buy things that don't help our cause? Like maybe another shopping center. Then he has no lab. There is an advantage having our own lab, rather than contracting.Please people, do your homework. We have too much to lose…
The WPI and their XMRV "discovery" is not all that it seems to be. Please, dig a little deeper people...
Who holds the patent for the reagents used in WPI's initial XMRV study? Why have the reagents from the study not been shared with other researchers who are attempting to replicate the findings?
The announcement of XMRV discovery was very well choreographed. 10/08/09: Science XMRV publication; 10/29/09: Dr. Peterson CFSAC presentation; 11/05/09: WPI press release announcing that VIP Dx is offering a lab test for XMRV; Mid-November 2009: WPI changed their website to state that none of the 101 patient cohort were from Petersons bio bank, and that none of the 101 patients had cancer. At least 4 patients from the Science study had cancer, according to Petersons CFSAC presentation (WPI-1118, WPI-1125, WPI-1150, WPI-1199). How many other patients had cancer? WPI states: Blood samples from the WPI repository were chosen at random and there were no patients chosen with lymphoma or mention of lymphoma in this study. Another preliminary study was done at a later date that had nothing to do with the XMRV Science publication. (http://www.wpinstitute.org/research/research_biobank.html) If WPI isnt forthcoming about this, how reliable is the info about the patient cohort or any other details about the study?
Why didnt WPI disclose that Harvey Whittemore is the sole owner of VIP Dx, and has been since 2005? Why doesnt WPI disclose that Judy Mikovits is the Vice President of VIP Dx, or that Vincent Lombardi is the Treasurer of VIP Dx? Clearly this is a conflict of interest and unethical. All parties involved have a financial motivation, and this has been cleverly hidden from the patient community.
Fact: Harvey Whittemore owns 100% of VIP Dx, (also known as Redlabs USA), and was the company President until 12/29/09.
Fact: Judy Mikovits is the Vice President of VIP Dx.
Fact: Vincent Lombardi founded VIP Dx in 2004, and sold it to Harvey Whittemore in 2005. He remains the company Treasurer. (http://nvsos.gov/sosentitysearch/CorpDetails.aspx?lx8nvq=3HqeF%2fFCg2b8fQKoGUKjpg%3d%3d&nt7=0)
Why has WPI and the Whittemore family not been transparent about their financial interest in XMRV? All of Harveys cronies are officers of WPI, VIP Dx, XMRV Diagnostics, and XMRV Holding Corporation. WPI Vice President, Michael Hillerby, is one of Harvey Whittemores cronies and is Secretary and Treasurer of XMRV Holding Corporation (http://nvsos.gov/sosentitysearch/CorpDetails.aspx?lx8nvq=Hq0jXLdsqHTjwzedr32I5w%3d%3d).
Fact: Harvey Whitemore founded XMRV Diagnostics, LLC on 7/03/08 (http://nvsos.gov/sosentitysearch/CorpDetails.aspx?lx8nvq=jpuvh8GU2C0X6t5ANvP6ZQ%3d%3d&nt7=0).
Fact: Harvey Whitemore founded XMRV Holding Corporation on 7/30/09 (http://nvsos.gov/sosentitysearch/CorpDetails.aspx?lx8nvq=Hq0jXLdsqHTjwzedr32I5w%3d%3d&nt7=0).
Please people, do your homework. We have too much to lose
What about making money off this. Well, it looks like conflict of interest. But what should he do with the money the lab makes, assuming it's profitable. Give it to the Red Cross? It makes much more sense to have a lab that that can be self sustaining. Or maybe he could have refused to offer the XMRV test, so the lab makes no profit from XMRV. What's the point of denying this test the the community, while other labs offer it. Is it better for the community if only labs other than VIPDx are testing.
Personally, I don't think the WPI have behaved unethically.
But I understand why some have gotten the impression that they have.
They've not played the PR well, especially in so much as it is directed at the science community, and instead they sometimes seem to behave like an advocacy group. Right from the start I was concerned that this could undermine them if the link between XMRV and CFS proved difficult to confirm or false, and from my reading of science blogs etc, it seems that it has begun to. I really wish they'd been more cautious in their approach right from the start.
Abide by the rules or don't post. Using language such as 'wake up' and 'you, you, you' and annoying little insults like 'sheeple' displays a complete lack of empathy with fellow suffers. Either that or this post was indeed, what is known in the UK, as a 'wind up'.
Moderators, any chance this thread can be locked/deleted?
This person seems to have registered here purely for making potentially defamatory claims against Harvey Whittemore. The above can be easily refuted by looking on the Forbes list, where surprise, surprise Harvey Whittemore is nowhere to be found.
Veritus, I am afraid you lost me on the claim they are not sharing. Two reasons:
1) Mikovitz listed on Jan. 22 about eight different labs they are working with. Now come on, if they were not sharing with these labs, how stupid would it be to put that out there publicly, on video on the Internet?
2) WPI has strong motivation for labs to confirm their findings. Whether it is for status (go down in history), altruistic desire to help the afflicted, or pure money, the motivation is there for them to do all they can to help other labs confirm their findings.
So, I am afraid that I doubt your claims of fact, and I don't agree with your conclusions. For homework, maybe you should listen to the Jan. 22 speech. And again if you already have.
We are a fairly desperate bunch and as such, ripe for the picking. The WPI has done a great deal for each of us. Even if XMRV does not turn out to be the 'it', they have certainly brought more research mullar to CFS then anything seen before..
For all their publicity they're a small organization. I had a surprise chat with Dr. Mikovits. At one point I had noted all the errors in the original version of the website (this was in reference to something else) and she laughed and said I wrote the entire thing...I was kind of busy at the time. . If Dr. Mikovits is writing their website you can see they're stretched a bit thin. Her talent is not in writing - her talent is in labwork.
.......................................
I disagree with the authors conclusions but I don't disagree with his ability to post those facts here. He did some digging - good for him/her. We can decide what to make of them.