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WPI ethics...

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Angela Kennedy

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Like JPV, I'm not particularly optimistic about XMRV. I'm trying to keep an open mind, but I do feel it's rather unlikely that the cause of ME will suddenly be found. After all, we still don't know the cause of many other neuro- immune and auto-immune illnesses, for example, MS, rheumatoid arthritis, motor neurone disease, despite years of research and lots of money being invested.

I think the best that can be hoped for is that a) some ME sufferers will have XMRV as part of their illness and that treating this helps these people, just as treating other viruses has helped some, and/or b) the interest in XMRV will give researchers the impetus to find out more about the disease process so that although the cause may not be clear, treatments will be identified so that the illness can be better managed.

It's difficult to voice that opinion here as so many people have so much hope that XMRV will be the answer, and hope is such a positive thing.

We also seem to be in a similar situation as Lyme disease has been in for decades, with disagreements about the validity of tests. And with Lyme, even where testing seems conclusive there seems to be no one clearly effective treatment. So I worry that this may happen here too, even when the testing issue is resolved.

But I hope I'm completely wrong about all this :rolleyes:

Jenny
Hi Jenny,

Sadly, I think you are completely right and I agree wholeheartedly. The Lyme issue is somewhat of a precedent here. I'd add to your 'best we can hope for' wishlist the damaging effects of an illogical psychiatric paradigm of difficult to explain somatic illnesses might hopefully be mitigated, though it looks like that won't happen without a fight. As usual, the 'science' is scrappy, and not just methodologically!

Also - maybe the cohort problem which has dogged the research for years and years will eventually be recognised. Though presently there is something of an 'Emperor's new clothes' aura in the scientific community about it. It's the little peasant boy advocates who keep bringing it up I note, and if ever there was a "The king is in the altogether" moment, this is it!
 

Adam

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Two Good Things

Two good things to come out of this thread. I won't go into all of the bad things - they are too many to mention, suffice it to say I'm feeling the wrong side of severely cheesed off right now and this is my last post (at least in the forseeable future).

I will continue to comment on blogs and read forum posts and goof around with all the nice folks in CHAT.

The continued debate about the WPI methods versus the follow -up studies. Thanks to all who have contributed and helped me understand what is...very difficult to understand! In particular Gerwyn and Kurt.

But the best thing by a country mile occurred in CHAT when I raised the subject of Harvey Whiitemore and this thread, and someone said *"I don't care if he is Al Capone".

If laughter was a cure all I'd have chucked my walking stick into the wheelie bin and be half way through a marathon by now.

*I am not at liberty/willing/able/feeling in the mood right now to disclose who said this. This is my right. You may think I said it. Or just made it up. You cannot google it. You will just have to wonder/speculate.

Adam
 

ukxmrv

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Veritas,

Do you understand that some patients are also digging, looking and critically examining all the papers on XMRV, the WPI and VIP dx and that the points you mention will not matter or rate highly for some of us?

I'm also a 20+ year patient. I couldn't care less who owns what. I have know from early on that the VIP and WPI were connected by people and financially. I read the reports and asked questions. I don't feel that anything was hidden from me.

What about Harvey Whittemore and his business dealings and possible bullying. Well, I just do not care. He can bully officials and business as much as he likes. It's just not relevant. I presume that if someone is a property developer he knows how to play the system. His business ethics in that area are irrelevant to me.

If he started bullying patients then that is another story. I do not feel coerced into giving money to the WPI and don't believe that they are acting in a coercive manner.

So where does the leave you. With an opinion. One person with an opinion. Just like me.

You do not have the right to lecture me, to talk down to me and to tell me that I should be feeling the same as you. Your messages give the impression that somehow you are right and the rest of us unable to find the facts and determine what is important.

Because I have been ill for so long and been thoroughly ripped off over that time I am careful and cautious. Nothing that I have heard about the WPI, VIP or the research sets off alarm bells for me. They are for you and I do appreciate that. Please do not assume that it is the same for anyone and that we have a lack of judgment.
 

CJB

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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...
It's pretty clear to me that the Whittemores were motivated to help their daughter. If spending $2 billion would've cured her, I'm sure they would've gladly paid. You make it sound as if her health were being held hostage and paying a ransom would've cured her.

According to Wikipedia, Mr Whittemore used his influence to parlay his own assets into enough to launch a first-class research effort. He used his influence and power to help his daughter. I don't think he used his daughter's illness to garner power and influence.

Funding and support

Initial funding for the institute was provided by the Whittemores[12], who in 2004 committed $5 million and successfully lobbied the Nevada legislature for support and arranged an affiliation with the University of Nevada, Reno, the Whittemores' alma mater. The Nevada legislature agreed to provide $3 million to fund the institute.[17] An additional $10 million was secured from the governor and legislature for a new building at the University of Nevada's medical institute, where the WPI would share space.[3] The Whittemores have received contributions as large as $50,000 from friends, to as little as a few dollars from individuals with CFS who are ill, unemployed, and poor, but passionate to help.[3] The institute has received federal funding through the political support of Nevada's senators John Ensign[18] and Harry Reid,[19][20] the latter a close personal friend of Harvey Whittemore.[21][22]

Supplemental funding for WPI comes from the sale of XMRV diagnostic tests by Viral Immune Pathology Diagnostics (VIP Dx), a company owned by the Whittemores and co-founded by one of WPI's lead investigators.[23] In September 2009, the WPI announced that Judy Mikovits and collaborator Jonathan Kerr of St. George’s College in London had been awarded a $1.6 million, 5-year grant by the National Institute of Allergy and Infectious Diseases for their proposal to develop new "strategies to decipher the pathophysiology of chronic fatigue syndrome".[24]
Your biggest complaint seems to be that the Whittemore's have "fooled" us about their motives. That they might make a buck.

So what?
 

Lily

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Adam said:
Two good things to come out of this thread. I won't go into all of the bad things - they are too many to mention, suffice it to say I'm feeling the wrong side of severely cheesed off right now and this is my last post (at least in the forseeable future).
Adam, Adam, Adam........I'm glad you said you will continue to comment on blogs, read forum posts and still goof around with the nice folks in chat. I will miss the sharp talent, witty sense of humor and all round good nature of your posts and the bright smile of your avatar terribly. You have been a tremendous addition to this site, and I hope you know that. Cheesed off is a Brit expression, I guess. I think I get the gist of it and know I've been there (um maybe still there a little bit), and hope time will take care of things.

Your presence is valued, but as I am learning, being cheesed off messes with a whole lot of stuff with us CFSers. I'm trying to stay away for a while myself. So far I have succeeded in seriously limiting my time here.

You take care and know that you will be missed. Hope to see you in chat.:hug:
 

Cort

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Harvey - I liked that Al Capone reference - and I agree. We can't afford to be choosey - and I'm not implying anything about Harvey.

Nevada politics is, what I've heard, is pretty rough - as you would expect with this states history. No shrinking violets here.

We really have no idea how much the Whittemores have put into the WPI but I imagine that its substantial; Kurt has pointed out to me how much these types of operations cost to run - it was pretty shocking.

Harvey must have pulled out every chit he had to get a partially state funded research institute mostly devoted to CFS (can you imagine?) built. (Nevada is not known for its proactive stance in medicine). Thats an unbelievable accomplishment. The state budget was going down the tubes as that thing was getting passed. I really couldn't believe it hung in there in that budget.

I wouldn't be surprised if Harvey isn't relatively cash-poor right now. If he was heavily invested in real estate - as we know he was - he must have taken a tremendous hit. The MGM just built the biggest single addition to the Strip ever - four major hotels if I remember correctly; I believe two of them are shuttered -finished, ready to go, and locked up....The Station Casino's - billion dollar properties - bankrupt. It's tough, tough times here.

Alot of these guys are leveraged to the hilt.

They did other things very well. I'm not concerned about the financial end of things; Harvey can do his thing - I hope he does it very well. :)

WPI - On the other hand, WPI definitely needs to improve its act in some ways. Andrea going off on the CFIDS Association on their Facebook site because of Dr. Vernon's critique was not pretty. Dr. Mikovits very personal - characterizations of researchers that don't agree with her in emails is not pretty. Talk of selectively sharing reagants is not great. The Lab shutting down its operations or a month with that kind of obscure message (at least I find it obscure) was not great. Publicly questioning researchers motivations is not great. Stating one thing in a major research paper and then contradicting it later is not great. Not answering repeated questions about cohorts is not great (why not just answer!??Apparently being caught on the lymphoma patients (?) is not great.

Some of these are just matters of the boundaries of professional etiquette being transgressed; others like the lymphoma problems (if they are true -there are still questions) could damage their scientific crediiblity - something they need to gather more funds. If XMRV was blowing ahead full steam I wouldn't worry about it - all the little stuff falls away when you're successful! - but I think with XMRV finding on at least temporarily on shaky ground, they could hurt their chances for funding.I don't think they are nefarious at all - it just seems like a creaky operation to some extent. They're just a small group of people really. (Dr. Mikovits writing the first website! - writing is NOT her thing!) I don't believe the WPI had published ANYTHING on CFS prior to the Science paper. I think these are the growing pains of a small Institute being thrust into the limelight.
 
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Accusations... Have you contacted the news media, maybe the one who wrote the story calling Harvey a bully, to see if they will report on this. A newspaper in Reno might be interested in this story, if they can confirm it. If they can't, well then....

While this has all been very interesting, and possibly some legitimate issues have been raised, I wonder, does this mean that the XMRV discovery is false? Most of what you present is on the business side. Although you do bring up a question of conflicting information about whether lymphoma patients are included. (Please someone get us the correct info on that.)

But the rest of it is about Harvey and his business practices. So my question to you is: do you believe Mikovitz falsified the XMRV discovery? Do you believe Cleveland Clinic and National Cancer Institute falsified their results as part of the study?

Now if you want to claim sloppy science or fraud in test results or mistakes based on overzealousness, then let's hear the evidence. The business side is not a big concern to patients who just want to know the truth of why they are sick. Their latest hope is XMRV. If you want to claim sloppiness and mistakes or fraud, then include CC and NCI and please give the evidence.

Tina
 
M

monkeybusiness

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Veritas Aequitas = ERV = Keepcalmandcarryon

I've personally seen this crappy song sung in three places, all with the same wording and timing. My guess is that ERV aka Abbie Smith who is a virology student at Oklahoma Uni = Veritas Aequitas = Keepcalmandcarryon at Wikipedia.
 

Cort

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There's definitely good evidence suggesting that some lymphoma patients in the studies. Both Dr. Vernon and some posters on the Forums have gone through that. Would it impact results; they've found five patients with cancer - those five alone would certainly not impact the results but they only had info on 32 of the patients and I think there were a hundred or so. Were there as many as 20 lymphoma patients?

I think it makes Dr. Vernon and others wonder if these were really, really sick people. I would imagine that really, really sick people would still show up in the UK and Dutch studies - I don't think that's the problem but it could contribute to the poor results.

Lets say each study has a few 'problems' that reduced the likelihood of XMRV being found; maybe XMRV prevalence isn't as high in the UK, maybe some of their lab methods weren't as adept at finding the bug....etc. and then you throw in the fact that at least in the blood it usually shows up in really ill people - and there are only a few of them in the study - then you do have a chance of getting 'zero' results even when it is present in some patients.

Without knowing for sure I think that's Dr. Vernon's concern. The lymphoma question has been floating around in the background for several months -I think this last negative study is worrying people that XMRV is losing inertia in the research field - they're being more blunt about their concerns.
 

Esther12

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re eritas Aequitas = ERV = Keepcalmandcarryon

I really doubt it with Erv.

She seemed to get pissed off with a few CFS commenters on her blog, and then saw Mikovits saying she thought the first London study had been corrupted by insurance company interests without having the evidence to back it up.... the ERV blog just has a hyper-aggressive style and likes to run with it whenever there's an opportunity. I've not seen her mention the whittemores.

I'm sure lots of different CFS patients sometimes sound as if they're using similar talking points too.
 

joyscobby

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Two good things to come out of this thread. I won't go into all of the bad things - they are too many to mention, suffice it to say I'm feeling the wrong side of severely cheesed off right now and this is my last post (at least in the forseeable future).

I will continue to comment on blogs and read forum posts and goof around with all the nice folks in CHAT.

The continued debate about the WPI methods versus the follow -up studies. Thanks to all who have contributed and helped me understand what is...very difficult to understand! In particular Gerwyn and Kurt.

But the best thing by a country mile occurred in CHAT when I raised the subject of Harvey Whiitemore and this thread, and someone said *"I don't care if he is Al Capone".

If laughter was a cure all I'd have chucked my walking stick into the wheelie bin and be half way through a marathon by now.

*I am not at liberty/willing/able/feeling in the mood right now to disclose who said this. This is my right. You may think I said it. Or just made it up. You cannot google it. You will just have to wonder/speculate.

Adam

I am with Adam had enough will not be posting but will read and chat.
 

kurt

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or, could he have been right on a legal point, thus the council attorneys advising a settlement?
I have covered city politics before. Usually governments don't cave into threats of lawsuits unless they think they might lose.
So maybe he was right to bring that lawsuit.
But I am also familiar with master plan and that city's have a right to have one and enforce it. And that is what makes me think that maybe he must have a point, else the city wouldn't have caved. I just haven't seen where city caves unless they think they might lose.
This is from reporting on local government and many zoning issues for 7.5 years. Of course, this is Alabama. ;-)
Tina
You might be correct Tina, Whittemore may have be legally in the right, someone pointed out to me that there was also a report of some preliminary agreement authorizing the casino, and what he did was to force them to honor that over the objections of the citizens. But that is where I think you can say, ok, if that is not bullying, what is it? I think it is certainly poor form to force the will of a Casino on the citizens of a town who do not want it there. Was there some backhanded maneuvering? I have no idea, but personally I just could not do something like that, I value living in a democratic society, or at least a country that aspires to that (the US is a representative republic and has not yet advanced to true democracy in my opinion, but that is off topic and a whole 'nuther forum). So I would not do that but Harvey Whittemore would. That means I will be careful to evaluate his activities, particularly the science of XMRV, which he has funded and what really matters to us here. Maybe he is trying to redeem himself a little by doing some good for sick people, at least Harvey Whittemore believes we are really, really sick!!! Kudos for that, and another thought, to get real attention for CFS he has found a way to link in with a cancer, and guess what, the WPI is being built in a major cancer research facillity. Is XMRV just more maneuvering to help find a cure for CFS? Did he really need to find some cancer link to get all that funding put together? Maybe not but what an interesting coincidence, XMRV ties us into retroviral and cancer issues, we could not ask for a better spotlight. Now if it turns out not to be true, at least they did find some XMRV in some subset of patients (once their cohort criteria is fully revealed we may know that), so maybe even if XMRV is busted, there will still be some carry-over and funding from the consciousness-raising of all this drama.

Even if the number is off by an order of magnitude of 10 or 100, I understand what you are saying. Others may disagree.
I would not sit well with myself if my family accepted money for our non-profit from people who don't have enough money for food and housing before we donated enough of our own money away down to a more similar level, though it is the prerogative of each donor.
It also dismays me to see the public face of the WPI on FaceBook complain repeatedly that the CAA didn't fund their studies when that subject has been beaten to death, and the CAA has less funds available to it than the WPI.
I donated to them anyway even though I didn't really think they need money from me to get things done.
But as for financial motivations, I don't see how it could be significantly profitable unless their research did pan out, and if it does pan out, then that should mean it's scientifically sound, shouldn't it?
This is not Harvey Whittemore's only project, in fact it is Annette Whittemore's primarily. So she may not have all of his funds available, he has a lot of expensive projects in the works.
 

Wayne

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Our Heroes

I have more hope in the work of people like Paul Cheney, Kenny Meirleir, Sarah MyHill, Amy Yasko, Rich Van Konynenburg, Andrew Cutler and Freddd. This wonderful site, that Cort has been kind and industrious enough to put together, for all of us, has proven invaluable to me. I've learned more solid and useful information in the past few months, of scouring this site, than I have in the previous ten years. I'd rather focus my time and energy by incorporating elements from these people's research into my health regimen, than wasting precious time waiting for a magic bullet cure... a cure that may never come.
Hi JPV,

Great post, great last paragraph. I wholeheartedly agree. I myself suspect that I will not test positive for XMRV (I'm hoping to test negative; not that it really matters what I hope for however :Retro smile:), but do feel I have "core" ME/CFS. I just think that ME/CFS is a multi-systemic breakdown that can be caused by a variety of factors coming together in any given individual at a given time. I suspect XMRV will be shown to be just another opportunitistic infection that takes advantage of a compromised immune system. Rebuilding such an immune system will likely be a long hard slog for most of us, with each of us having to address a variety of contributing factors.

What if XMRV doesn't pan out? People will be devastated on a magnitude 1000 times greater than when Florinef didn't prove to be the "answer".
Of all the points that Veritas has made, I take more exception to this one more than just about any other. I just don't view PWCs as being so emotionally or psychologically fragile as this assertion would imply. Reminds me too much of all the psychologizing that is already going on.

It seems to me that most people on this board are highly intelligent, and fully realize the XMRV studies may not pan out. But there is much appreciation for the efforts that are being made to determine the science and the truth. WPI, despite whatever shortcomings they may have, epitomizes these efforts more than any other research institution at this time.

Adam, Adam, Adam........I'm glad you said you will continue to comment on blogs, read forum posts and still goof around with the nice folks in chat. I will miss the sharp talent, witty sense of humor and all round good nature of your posts and the bright smile of your avatar terribly.
Well put Lily. Just love that bright smile everytime it shows up on the screen. Take good care Adam, whatever you decide to do from here.

But as for financial motivations, I don't see how it could be significantly profitable unless their research did pan out, and if it does pan out, then that should mean it's scientifically sound, shouldn't it?
Good post Charityfundraiser, great last point.

Veritas,

Do you understand that some patients are also digging, looking and critically examining all the papers on XMRV, the WPI and VIP dx and that the points you mention will not matter or rate highly for some of us? So where does the leave you. With an opinion. One person with an opinion. Just like me.

You do not have the right to lecture me, to talk down to me and to tell me that I should be feeling the same as you. Your messages give the impression that somehow you are right and the rest of us unable to find the facts and determine what is important.

Because I have been ill for so long and been thoroughly ripped off over that time I am careful and cautious. Nothing that I have heard about the WPI, VIP or the research sets off alarm bells for me. They are for you and I do appreciate that. Please do not assume that it is the same for anyone and that we have a lack of judgment.
I much appreciated your post ukxmrv. Well said on so many points.

Thanks to others who have posted good information here (Dorothy comes to mind with her research). I'm about ready to let go of this thread. I'd like to see it run it's course as I don't see a lot of benefit for many of us going forward much longer.

Best to All, Wayne
 

kurt

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Thread closed, the reason

MODERATOR - After reviewing the past few pages of posts, I have decided to close this thread temporarily, in order to discuss this issue with the other moderators and with Cort. I think the topic of WPI Ethics is a legitimate topic but the biases here are clear, some support WPI and some do not and I don't see anyone really being helped by continuing this. The discussion seems to have gone as far as we can take it without endlessly hashing over issues unrelated to CFS. Also there seems to be too much focusing on Harvey Whittemore which is really unfair to WPI, and while I have contributed myself, and agree there are some legitimate issues, I don't think this is the best place for that type of investigation. So it is clear that this thread is getting off the topic of CFS. Also several forum members have asked that the thread be closed and that usually means more have the same opinion.

However, there seems to be an interest here in another topic that I have not seen elsewhere on the forum other than a few posts here and there, and that I believe should be discussed, and that would be a thread for those who are pessimistic about XMRV and would like to discuss their thoughts and findings and opinions. So maybe we need that thread, something about XMRV science only, not about WPI or any of the personalities involved. I'll post a link here if/when that happens, please PM me if you have any suggestions for naming/topic, etc. There are some legitimate issues that can and should be discussed by those open to a pessimistic view of XMRV and maybe looking at some next steps in the event that XMRV either is busted, or takes too long to resolve.
 
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