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Dr. Lombardi is Research Director

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Daffodil, Mar 24, 2011.

  1. sickness

    sickness

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    Kate, I really feel your pain. Being sick with this horrid disease is enough of a rollercoaster ride. All the recent reasearch shenanigans sure haven't helped with that!
    I agree with Riley that there are a lot of reasons to retain hope (and well listed Riley!). I would like to add one more :

    Retroviral involvement in ME/CFS would really explain nearly everything about this disease. We know that this faimily of retroviruses is known for causing problems with the immune and neurological systems. Sound very familiar. I'm sorry, the theory that XMRV is a major player is just too good, it makes so much sense.

    The insensitivity of these neagative researchers only goes to prove that they have no clue when it comes to this disease.

    And one more thing. Don't let the bastards get you down!!

    take care, ness
  2. fingers

    fingers Senior Member

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    Well done Kate, a great demonstration of your courage, and your strength.

    Others have also given us an insight into their own strengths, weaknesses, and motives.

    Steve
  3. Starlight

    Starlight

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    regardless of whether xmrv works out or not ,and i believe that it will, Judy Mikovits has and is playing a pivotal role in bringing ME /CFS the attention it deserves and needs. She shows enormous courage and fearlessness in thrusting it into the limelight along with WPI.Where were the old ways of civility and political correctness getting us .Nowhere, as usual .I have been waiting for nearly 30 years for some answers,while seeing the daily suffering of my child ,through her childhood , teens ,twenties and now her thirties.WE dont need any more of the polite fossilized science in suits.there has been corruption in churches ,in banks ,in business,and I think that it will be shown to have been operating in the field of ME/cfs also. Science is working fastter now on this ,thanks to WPI and Judy Mikovits.She was like a breath of fresh air ,rather she was and is a veritable hurricane of fresh air.I thank God for her courage and fearlessness.How we needed that .Regardless of how Xmrv works out WPI and Judy Mikovits have made the difference to this .They hve been the catalyst.
  4. Cloud

    Cloud Guest

    Thanks Riley....your post is a breath of fresh air, and in sinc with my usual, yet recently obscured perspective. Thanks for pointing the way back.

    Starlight...Really like your post too.
  5. Bob

    Bob

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    It's good to be reminded sometimes, isn't it!
  6. Bob

    Bob

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    I agree! Good post! Thanks for that, Starlight.
  7. Cort

    Cort Phoenix Rising Founder

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    Nice summation Riley...I'll use this in the XMRV buzz page if you don't mind (and I will credit you, of course)

    Whatever happens Kate don't give up hope and don't pin all your hopes on one thing. I'm going through last years research - there's alot of interest stuff going in different areas. However XMRV turns out you can know there are other good things on that may help.
  8. kurt

    kurt Senior Member

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    I agree with this, just because a researcher makes a discovery, that does not automatically give them all the skills needed to run a research organization. It may even be that Judy asked for this change, needs a change of pace herself.

    What worries me is that the current situation has been giving Judy and WPI a persecution complex, accusing researchers and publishers of playing politics is clear evidence of that. This is not unusual when a researcher has a hard time getting something published. But we don't have the whole story. Unless you know what the journals have said to her, and read her papers, there is no way to confirm that there is some type of political opposition to her personally.

    There could be some very basic, scientific problems with those papers. For instance, there are now many new steps needed to verify lack of contamination, and I suspect if Judy wants to get published again she will have to go through all of those steps.

    I do know from other researchers the journals are cooling down their interest in XMRV altogether now, XMRV is old news and unless something dramatically new happens, they are not going to publish more papers that just repeat the previous papers, positive or negative. (yes, negative papers are also getting rejected by publishers now). I think this is a scientific issue and not political. There are certainly political issues regarding CFS, I am not naive about that, but just don't think this is one of them.

    The retrovirology community made a serious and expensive effort to confirm the findings of Lombardi et al. That is thanks to Judy Mikovits getting a CFS study in Science. This should be happening with EVERY credible new ME/CFS hypothesis, we are worthy of front page attention, this is long overdue. The pattern has been set. Whether or not XMRV works out, our course has been corrected. We know what we should be seeing from the research community now, they have ignored us long enough.
  9. Riley

    Riley

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    Feel free to use it Cort. I'm glad to be able to contribute.
  10. omegaman

    omegaman

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    Does anyone really think if Dr. Lombardi had been the head of research of the WPI and not Dr. Mikovits that the grants would have been rolling in to the WPI?

    Has any XMRV grant gotten through the CFS SEP panel since the science paper? I have heard the WPI has not been the only one putting in grants to study XMRV and CFS who has had there grants scored too low to proceed and get funded.

    The problems are very much political. Elaine Defrietas encountered the same politics about 15 years ago and had the exact same problems getting funding. Different decade same game.

    The problem is the CFS SEP panel not scoring XMRV grants high enough for them to move on. I'm going to make a guess that Dr. Jones may have had a hand in that when he

    was on the panel. Dr. Jones has been a long time barrier to us getting virus's seriously looked at and funded in CFS research. And then someone thought Myra McClure was a great researcher to have on the panel after publicly stating nothing on God's earth could convince her to do more CFS research. Talk about your possible bias!

    The CFS Sep Panel is very dysfunctional and has been a major hindrance to CFS and ME research. If things don't change after the State of knowledge conference with regard to

    the number of biomedical grants getting through the panel including XMRV then something really needs to change in regard to how CFS researchers get funding.

    I would also remind people that the Spanish researchers who were able to find XMRV have encountered the exact same problem with their government not funding them further. Is that somehow Mikovits's fault too?

    To put the lack of funding for the WPI on Dr. Mikvovit's personality or any of her actions is really missing the larger picture of what is going on. It's a very unfair assessment of the current situation.

    Funding of any viral research into CFS has been abysmal in the 27 year history of the government researching this illness. Whether it was EBV, HHV-6, Enterovirus's, the grants are just never there and researchers have just in large part given up applying for them knowing it's futile with relation to the CFS and the SEP panel.
  11. kurt

    kurt Senior Member

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    'politics' seems to be Mikovits's way of saying 'I can't get anything published'. Might there be some valid scientific reasons for that? I don't think politics is her trouble... although she is trying to politicize the issue herself with these comments. See my comment above.

    Until we see the peer-reviewed reports this is hearsay. Things could change, some labs have not found contamination until after they leaked information they found XMRV... Also, there are researchers continuing to elaborate on the contamination angle, they will likely also have more to say. Silverman, for example, is studying a possible source of XMRV contamination in his lab that could affect other labs using his reagents or samples (which may include WPI). So taking a balanced view, maybe there will be something new on both sides of the debate.

    I have commented on this in another thread, this report lacks 'face validity'. Just seems improbable that a low-resolution test like a full genomic profile could pick out a viral fragment in plasma that much more sensitive PCR tests missed. The difference in sensitivity can be thousands of orders of magnitude between the two types of test, there is just no comparison. As I understand the math, XMRV would have to be flooding the plasma for gene profiling to find it. But that is not what WPI says is happening. The fact there were no LTR chains is also very strange, without LTR, how did the XMRV fragment integrate into the 'chimera'? Also, did they run all the contamination studies that have been now shown to be important? More than just mouse mitochondria DNA... This sounds more like what you expect from finding a HERV, which can be partial fragments like that. Maybe this will be the 'big news' being promised, but I think we need to wait to see how it turns out, and see what peer reviewers make of their finding.

    The WSJ news is due mostly to a single journalist (Marcus) who is certainly a valued asset to the CFS community, but that is something long overdue, more attention to ME/CFS is not an indicator of how scientific studies will turn out.
    Mikovits moving jobs also has nothing to do with how these studies will all turn out, or what will be the eventual scientific consensus.
    Drug companies are always interested in making more profits, of course they are watching this situation carefully. But again, that is not an indicator of how things will turn out.

    This I agree with, some justice for suffering ME/CFS patients would be nice. But if we prop up a finding that eventually is proven to be due to false positives, how will that help us in the long run? I think we should hold back until the XMRV debate is over, and meanwhile continue supporting ALL the various research efforts underway for CFS.
  12. liquid sky

    liquid sky Senior Member

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    Talk about taking a positive post and turning the hope it was meant to give upside down, what's up? Why are some so against XMRV as a possible cause of CFS?

    I am reading the book "Olser's Web" and this is so strangely similar to what happened back in the 1980's. Politics are very much involved now, as they were back then.
  13. Cloud

    Cloud Guest

    liquid sky, yep Deja Vu indeed. Change the names and dates, and much of it would easily pass for what's happening now.


    Kurt, I would need to go back and check some information, but I don't recall the "politics will soon go away" statement by Dr Mikovitz as being soley about her inability to get published. It was more focused on the political charade as a whole and was an attempt to reassure a roomful of patients (including myself) expressing concerns and asking questions about this dilemma. It was an expression of care for us....not herself. Even if xmrv turns out to be benign, I'd still see her as a hero.
  14. Riley

    Riley

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    Kurt, I actually had something written in this post originally directed at you saying that it wasn't necessary to come in and tear it apart, but then I laughed as I deleted it and thought, "No, he won't see this, much less take the time to rip it apart and shit on it." But Holy Hell, here you are doing that exactly!

    I did not write this to offer any sort of proof about XMRV. I am simply offering my thoughts and feelings and why I am still optimistic about XMRV. I also wrote it to offer hope to others and as a counter to the prevailing attitude of doom and gloom regarding XMRV that has been prevalent on the forums recently. i am not delusional that it is 100 percent the answer, nor am I a child that needs to be told to not get too excited. I too support other avenues of research, but think it is far too premature to abandon this one.

    I actually have a lot more to say, but I am simply too ill to continue writing at this time.

    ETA: I just want to make it clear that I am not angry, nor do I have a problem with Kurt personally. I am just, let's say bemused, by his anti-XMRV militancy as of late.
  15. Bob

    Bob

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    Kurt, the WPI are of the opinion that their studies are not getting published for reasons other than the science. Of course you don't have to believe them but are you forgetting the hoops that the authors of the Science paper had to jump through to get that published? No one can accuse those authors, including Judy Mikovits, of not knowing their science. The paper was extremely rigorous, and it took the authors months to get it to the level of proof that Science demanded. If you compare this to the quality of recent PACE trial, or some of the papers that have been published in PloSone for example, then I don't honestly see how you can accuse the WPI of being sloppy with their science.

    The simple matter is that the journals don't want to touch XMRV for whatever reason. Maybe it's just too much of a political hot potato for them, or maybe they are being lent on. I have no way of knowing that this is the case, for certain, but I do not believe that the WPI lacks rigour in their science. If you watched the Alter/Lo presentation, you would have seen that the WPI's research is good enough for Harvey Alter, a world class virologist. But apparently it's not good enough for lesser scientists.

    Yes, some of it is hearsay... But that's the point... In the absence of published studies, it is these leaks of information that are giving many people in the ME community hope.
    You might not approve of patients hanging any, of all, of their hope onto XMRV, and it might not be a healthy thing to put all of our eggs in one basket, but XMRV does certainly give us a narrative to follow, and a glimmer of hope to hang onto. It also gives the media a CFS/ME news story to follow and develop, which i believe has been exceptionally helpful.
    So I think you should allow people to follow the positive XMRV narratives as well as being subjected to a barrage of negative XMRV studies by curiously incurious researchers who seem intent on denying any connection between CFS and XMRV, even though it has not yet been disproved.
    We know that Judy has further potentially significant XMRV research results to share, because she has said so. You can call this hearsay if you want to.

    Yes, things could change, and already have changed. Do you remember how everyone was accusing Judy of only detecting mouse contamination? Well the science has moved on now, and suddenly no one is accusing her of that anymore. Now everyone has realised that XMRV is real, but instead of investigating it with the curiosity of a scientific mind, they are not detecting XMRV themselves, and because it doesn't fit into an expected pattern of behaviour, everyone is now accusing her of contamination, but from a cell line. How things change!

    If you watch the Harvey/Lo presentation, they seemed certain that very small differences in PCR protocol can make all the difference between a positive and negative results, especially because they are testing at the limits, with extremely low titres.

    I happen to share you scepticism regarding the 'chimera' news, because it doesn't seem to be based on any facts yet.

    At the end of the day, all of this is going to play out in the science, no matter what our personally opinions are. But I just wanted to point out to you, Kurt, that some of us still feel hopeful about XMRV, based purely on the evidence. We are also interested in other research as well, such as the recent protein study which seems quite hopeful.

    Maybe I'm being unfair to you, and I've misrepresented what you've said, but it does seem like you are keen to stamp on people's optimism. Apologies if my emotions are colouring my perception here.
  16. currer

    currer Senior Member

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    I agree with you, bob.
    I have read some abysmal "research" from the psychiatric school over the years, stuff that would embarrass a schoolchild.
    Yet it gets published and is not attacked.
    If the WPI cannot get research of much higher calibre published, perhaps they are justified in thinking that reasons other than scientific ones are coming into play.
  17. acer2000

    acer2000 Senior Member

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    A pharma company paid for the Valcyte trial at Stanford and there wasn't agreement on the association of HHV6 with CFS, so I agree and can totally see this logic.

    If people get even part way better on ARVs and their immune parameters come into line, that is pretty significant. It means that they are on the right track with looking for a retrovirus - which would re-invigorate research.

    Of course the risk is that if people don't get better in an ARV trial, people will dismiss XMRV even more. In this case, it could be that current ARVs won't work right for XMRV - but its still the culprit. They must be fairly confident that they have a compound that will work if they want to go ahead at this point.
  18. acer2000

    acer2000 Senior Member

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    Wow, and he accuses of Dr. Mikovits of bias? Thats pretty blatant. If he feels so strongly about xmrv being a contaminant, he should prove it directly (which his study didn't exactly do) - not try to manipulate patients by trying to influence the opinion of somebody who runs a web forum. Better yet, if hes so sure XMRV isn't associated with CFS, why doesn't he focus his energy on finding out what is the culprit? I hate to say this, but its easy to be a critic... its harder to pick up the ball and keep it moving in a new direction.
  19. acer2000

    acer2000 Senior Member

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    Any compassionate researcher or doctor who recognized the above toxic scenario to be the case would speak out against such spiteful attitudes on our behalf. Its one thing to think XMRV might not work out, its another thing to go a step further and attempt to thwart any other research on ME/CFS and perpetuate nasty politics and attitudes against people who are very sick and don't deserve to suffer.

    XMRV may or may not work out. But if Towers really believes that Mikovits forever damaged CFS by sticking her neck out, then doesn't understand what a "good researcher" is. Good researchers challenge the status quo and move the field forward. Nobody ever accomplished anything notable by doing the same thing everybody else did. Notable people think different and take big risks and get things done. They don't line up like sheep behind everyone else. Every new idea is challenged before its accepted. At least Mikovits is trying.
  20. Cloud

    Cloud Guest

    I have to agree this is about CFS and XMRV, not Dr Judy, her statements, and her personality. This would have happened to anyone in her position. Similar political interference has been happening to others in this ME/CFS arena for many years. The nefarious and corrupt political climate around this disease, is very powerful and hard wired. I'd vote for Joan of Arc over Martha Stewart any day to lead this challenge. Like the bumper sticker says...well behaved women rarely make history.

    Not appropriate for scientists to act this way? As far as I know, scientists have been publicly criticizing one another's work, motives, and reputations (ie. Pasteur vs Koch) for many decades. At least Dr Judy's motives are good, rather than self serving like many of those criticizing her.

    I'm surely not biased by unrealistic hopes for xmrv because it's not in my best interest that it turn out to be the cause (although I do hope it is significant for our community as a whole). I just believe that Dr Judy is an awesome scientist, with a heart, and the ovaries to stand up for a just cause.

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