Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
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Article: Mikovits Era at WPI Ends - The WPI Makes the Right Move In Letting Chief Researcher Go: An

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Oct 5, 2011.

  1. JT1024

    JT1024 Senior Member

    I've not been on Phoenix Rising for quite awhile by CHOICE.

    IMHO, not all information is presented accurately.

    Everyone is free to make their own decisions regarding what has transpired. While I've supported WPI in the past, I'm not very quick to do so now.

    I do trust Dr.'s Judy Mikovits and Frank Ruscketti.

    For those without scientific background, I've worked in clinical labs for 30+ years. Still do now.

    Before you implicitly trust ANYONE... do your homework.

    Even those who seem to be the most empathetic may not have your best interest in mind. I won't go into details but I experienced that first hand from my ex-husband.

    Those that write about science may not understand the science. Be careful who you trust.

    Fair warning.....
    currer and Enid like this.
  2. currer

    currer Senior Member

    Hi Cort,

    I understand where you are coming from.

    However I cannot agree with you that Judy Mikovits was controversial in any wrong way.

    (Here I would like to say that I dont feel comfortable discussing the personalities involved, because it seems to me taking a liberty and an affront to the dignity of someone who has put her career on the line to help us)

    I simply saw her as someone who told the truth. How are we to get anywhere if we cannot do this?

    I would like to ask everyone on the forum to think about this -

    Are there taboo areas in research?
    Was Judy Mikovits going in a direction in her research that upset people?

    And what does that say about a society that supposes itself to have respect for truth and the scientific process?

    It says a lot that this community has often expressed concern about allying itself to the autism community.

    Now why would that be?
    Autism sufferers are just sick children.They are not terrorists.

    So why is there this fear? Who has created it?

    It reminds me of the prohibition on lepers in the bible. They were not to be touched or you became unclean.

    Why? Do we think we are in danger of becoming unclean too?
    Lily, leela and Enid like this.
  3. Marco

    Marco Grrrrrrr!

    Near Cognac, France
    Firstly I have no idea whether XMRV or related retroviruses is 'it' for ME/CFS (ME month over then I assume?). I had rather hoped that the science would have proceeded in an orderly and logical fashion and answered that question. Instead, from an outside perpective, it has more resembled some sort of juvenile pissing contest more concerned with egos and being right than furthering scientific knowledge. The blame for this can't be pinned on one person.

    You are of course entitled to your opinion and it is your forum after all. You may also be right, you may be wrong. At the end of the day though it is only opinion.

    On the other hand this is what really disturbs me :

    "Of course it's not valid grounds but people are human - they will react negatively when confronted with situations that really upset them. Dr. Mikovits said something so inflammatory that a CFS researcher, of all things, refused to have anything to do with a grant for the WPI. So they both made mistakes; the point is that Dr. Mikovits created a situation which made if more difficult for the WPI to get the grant they needed to investigate XMRV."

    Yes people are human. It is exactly for this reason that publicly funded contracts are only awarded following a procedure that applies objective criteria and is fully open and transparent - to ensure that everyone has a fair chance to win Federally funded contracts and to ensure that personal bias or opinion plays no part in the process. If this individual felt so strongly they should have had the balls to pick up the phone and talk to Mikowitz or Annette Whitmore directly. Instead, lets be clear here, the situation you describe is that this individual took it upon themselves to deny the WPI (not just Mikowitz) fair access to Federal funding because Judy Mikowitz 'pissed them off'. I'm not sure how things work in the States but similar cases in the UK have not infrequently been taken to judicial review and substantial damages awarded to the injured party. I'm not naive. I know how these things work and that the real reasons for rejecting grant applications often don't appear on the records. Knowing it happens however doesn't make it any less illegal.

    More worrying still, is this is an isolated case or standard (mal)practice? Is Federal funding for ME/CFS research dispensed on the basis of what a small clique considers to be in the wider interests of the 'community' rather than on pure scientific merit as has been suspected to be the case in the UK? Who elected the panel to determine what is in our best interests?

    The upshot is that WPI were denied Federal funding for a project which may or may not have strengthened their case for XMRV/HGRV's. We may now never know which is perfect fodder for those who would be inclined to see the XMRV saga as Defreitas II.

    I'll leave it to you to decide whose actions have been more harmful.
    Lily, SOC, leela and 4 others like this.
  4. ty98


    I have been very remote to this CFS study, but felt that science just needed time to prevail. I feel the HOPE that we can have here for a cure. Anyone who is a suffer and surviving every day with CFS has a path like no others. Our stories need to be shared with others like us. Really, it is amazing that the line of information sharing is so meticulous on this subject. There is so much discussion on the scientist, procedures, funding, etc. I have a science background (25+yrs) and there are studies that go one every day that dont get any attention. Some are studies to find out toxicolgy effects on humans, which seams pretty important. Having a science background though, I can only accept sound results. The efforts for these studies by drs and scientist deserves respect for there dedication and service. But they have to allow time for confirmation, accurate analysis and interpretation. Until it has gone full cirlce, it is only preliminary findings. I hope this is not negative in anyway, just trying to stay with facts.
    leela likes this.
  5. currer

    currer Senior Member

    I think there is a lot more research that needs to be done.

    I am really disturbed by the implication that we should pass on to other research topics.

    The retroviral line of enquiry is only just started from a research perspective.
    PokerPlayer, leela, jace and 2 others like this.
  6. jace

    jace Off the fence

    Many other research avenues are being explored: EBV's, HHV6, ERV's, the done to death psychiatric etc etc. But only the retroviral hypothesis gets such a concerted effort to shut it down whenever it rears its ugly head. That fact alone rings alarm bells for me.
    mezombie, Lily, currer and 7 others like this.
  7. pine108kell

    pine108kell Senior Member

    Thanks Cort. I supported your efforts to educate the community when the WPI, and then Lo/Alter, results were first published. I now support your frank assessment of subsequent events that have now completely eroded those findings and some of the organizations and individuals that handled the situation very poorly. It is all very, very depressing, but the truth is better than misplaced faith. I don't know Dr. Peterson, but he sounds like the guy of person I would like leading a CFS research institution--WPI picked the wrong one.
    Sam Carter likes this.
  8. GaryK


    Canada Niagara Falls
    I totally agree Jace! Those who never "liked" the **retro virus** Hypothesis I'm sure are very happy to go back to the status quo causaion for ME/CFS.

    Wow, a whole three years on a retro virus and we want to say its over? Very sad for us if this turns out to be a retro virus and it contues to infect more children. Oh but we don't want to alarm or use any fear mongering. Lets pretend it isn't there:D
    currer and Enid like this.
  9. oceanblue

    oceanblue Guest

    Hi Cort,

    I'm normally a big fan of your articles and the way you tactfully deal with XMRV, but I'm bemused by your approach here which basically says "WPI/Annette Whittmore Good, Judy Mikovits Bad".

    Yet as CEO, AW was responsible for reigning-in JM if she thought her approach was inappropriate for WPI. And AW was side-by-side with JM in many of the controversial statements, including unilaterally renaming CFS as XAND (remember that?).

    The Whittmore's also set up WPI as researching CFS 'and other Neuroimmune Diseases' - which seems to put the cart before the horse given the exact nature of CFS is still unproven (personally I wouldn't be surprised if it is proven to be a neuroimmune disease but we can't yet say for sure). Likewise Annette Whittmore has been passionately committed to a retroviral explanation and forthright in condemning those who disagree.

    I don't really recognise your portrayal of Annette Whittmore as simply being a little naive in her choice of Head researcher. Given how even-handed you are normally, I'm a little surprised you've gone for what seems to be a lopsided, or at least highly opinionated portrayal of the situation. But maybe that's the point of editorials, to express strong opinions! They are, though, likely to draw strong reactions.

    ps the 'leave comment' button doesn't seem to work for many of us, so you're probably missing out on quite a bit of feedback. Perhaps that's a blessing :D
    Enid, leela and Bob like this.
  10. Anne

    Anne Senior Member

    I completely agree with you, Cort, and I personally found this editorial very helpful, one of many great blog posts. Thanks for your work.
    kurt likes this.
  11. Ian

    Ian Senior Member

    Wonders about all those poor people that put themselves on AZT and other ********** anti-virals **********

    Moderation Team: Text removed. Please maintain a respectful stance towards other people's treatments as evidenced in the PR forum rules.
    kurt likes this.
  12. ukxmrv

    ukxmrv Senior Member


    Do you mean like Dr Snyderman?

    A Hematologist-Oncologist and clinical professor of Medicine, Dr. Snyderman believes that where there is smoke there is fire. There is no plausible explanation for my results other than that treatment of a retrovirus improved my leukemia and my CFS. There is nothing about my clinical picture to say this is an unusual phenomenon.

    Dreambirdie and jace like this.
  13. Andrew

    Andrew Senior Member

    Los Angeles, USA
    That thing is, even if everyone (including Judy) agree that her study should be retracted, that doesn't mean that ARV therapy was a mistake. It worked for some people.
    currer likes this.
  14. floydguy

    floydguy Senior Member

    ********** an anti-viral isn't effective but for me and many others anti-virals have been the most effective treatment. Perhaps it's just lowering herpes infections and not addressing root cause I don't know **********.

    Moderation Team: Text removed.
  15. omegaman


    If a researcher swore they would never approve a grant with Judy Mikovit's name on it that person should be reported to an ethics board.

    Cort I'm really bothered by some of your remarks here. Especially the one about if you have a family to support you find a way to get along at work. Do you have experience supporting a family? I do. And I do it with this disease. But I would not keep my mouth shut if I saw a bad product being sold to patients.

    Yet I would not throw my ethics to the curb to get along at work even if to support my family. It seems Judy stood by her ethics in telling the truth or her belief about the VIPdx testing and I believe this is what infuriateed Annette and led to her firing. Had she shut up or "Got along" as you call it then Vipdx would still be offering a 500 plus dollar test to patients which probably was not accurate.

    I guess you would have just gone along and not spoke out about the testing so as to keep the peace. That would have been horrible ethics.

    Annette Whittemore has no experience at all in running a scientific endeavor and it has been her mistakes that have creatd this debacle. SHe is the on who trotted out Mikovits in front of the media with her on Nevada Newsmakers and other News programs. She could have had Lombardi speak some of the time but she chose not to. She use Mikovits and her contacts and prestige for the benefit of the institute and now that her comments have hurt the WPI's and her finances she fires her.
    I noticed the timeing of her firing interstingy has happened at the conclusion of all the Big fundraisers the WPI has had going on. The Gala and Vivint. Do you think they would have fired her before these fundraisers were over. I'm guessing not. So shame on Annette WHittemore as far as I'm concerned.
    I'm sure your article will get you in with her though and you will get some good interviews out of it and info in the future from the WPI. In that sense this article will help you I am sure.
    Dreambirdie likes this.
  16. Daffodil

    Daffodil Senior Member

    what can the wpi do now to maintain patient confidence and keep donations coming in? i imagine the ruscetti lab will be getting most of our donations now. maybe wpi will exist only as a treatment facility and lab forever?

    i am so relieved that at least 1 person is sticking with dr. mikovits. and ruscetti is a force. he reminds me of winston churchill lol. he must REALLY believe they are right!
  17. ukme

    ukme Senior Member

    Maybe it was the other was round Cort, Annette Whittemore couldn't find a way to work with Dr Mikovits. Whatever has gone on, I wish her well for her next job and hope she continues to try and help us because I had faith in her and I still do, and that's notwithstanding the $$ I have spent on XMRV testing.
    Dreambirdie likes this.
  18. Camilla


    I, too, agree. I think Cort has been fair in his reporting of the XMRV/MLV saga all along. We were all enthusiastic at first and disappointed when the theory didn't hold up.

    Please continue to speak your mind, Cort.
    Jenny, Nielk and kurt like this.
  19. Cort

    Cort Phoenix Rising Founder

    Dr. Mikovits could very well be right about not passing on the samples and Annette could be wrong. While I get that Judy was concerned about the VIP Dx test I can't see how that could have figured in her dismissal since VIP Dx removed the test from the market themselves - thus proving Judy's point. (I would note though the BWG study indicated that the WPI test was apparently no good either and the leader of VIP Dx, Vincent Lombardi, was the lead author of the WPI's Science paper. He was also the one who contacted Dr. Silverman for the initial samples and was in charge of running them - according to an interview on Nevada Newsmakers.

    What a hit at the end there! I focused on Judy because she was the one that made the comments that I believe injured the WPI. Annette, of course, bears responsibility for not reigning Judy in when it became clear that she not doing well with the media and for not making sure that someone with public relations experience spoke for the WPI to the media. She bears the ultimate responsibility for how the WPI fares - a difficult job in such a complex situation. I vividly remember Dr. Alter - the Lasker Award winner - throwing up his hands SEVERAL times and saying "this is the most complex situation I have ever encountered".. It was a rough situation for everybody. ..
  20. Cort

    Cort Phoenix Rising Founder

    My guess is that Dr. Ruscetti is probably the key figure here. We have focused on Dr. Mikovits but she has several times mentioned how she's consulted him at key moments and how important a figure he is been to her. He is, of course, a very well known researcher and is obviously not to be counted out. So yes, I agree he must REALLY believe they are right and that says something.

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