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WPI ethics...

Discussion in 'General ME/CFS News' started by Veritas Aequitas, Feb 28, 2010.

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  1. Angela Kennedy

    Angela Kennedy *****

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    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!
  2. Adam

    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
  3. ukxmrv

    ukxmrv Senior Member

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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.
  4. Jenny

    Jenny Senior Member

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    Adam - I'll be sorry not to read your posts. Hope you're OK.

    Come back soon.

    Jenny
  5. CJB

    CJB Senior Member

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    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.

    Your biggest complaint seems to be that the Whittemore's have "fooled" us about their motives. That they might make a buck.

    So what?
  6. Lily

    Lily *Believe*

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    Adam said:
    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:
  7. Cort

    Cort Phoenix Rising Founder

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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.
  8. usedtobeperkytina

    usedtobeperkytina Senior Member

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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
  9. Lesley

    Lesley Senior Member

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  10. 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.
  11. garcia

    garcia Aristocrat Extraordinaire

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    That sounds like a distinct possibility MB. Good detective work!
  12. Cort

    Cort Phoenix Rising Founder

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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.
  13. Esther12

    Esther12 Senior Member

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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.
  14. joyscobby

    joyscobby Senior Member

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

    kurt Senior Member

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    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.

    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.
  16. Wayne

    Wayne Senior Member

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    Our Heroes

    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.

    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.

    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.

    Good post Charityfundraiser, great last point.

    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
  17. kurt

    kurt Senior Member

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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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