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FDA/NIH PAPER in PRESS, by Mindy Kitei

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Mindy Kitei, Aug 10, 2010.

  1. SOC

    SOC Senior Member

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    Drat! And me flat broke.....
     
  2. SOC

    SOC Senior Member

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    LOL! Looks like it might be fun! :D I'm not sure I'm that confident, yet, though. ;)
     
  3. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Hey urbantravels, don't sweat it. We've all been there. By the way, I hope you don't think I'm Homer Simpson's dad. My avatar is a reflection of how CFS has made me feel, not who I am.
     
  4. SOC

    SOC Senior Member

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    Shrewsbury said:
    Wow, Shrewsbury, that a lot of minimum to ask for in order to celebrate. ;) I'm working closer to Cloud's idea -- Do we need a reason to celebrate? *grin*

    Seriously though, it's unlikely that a scientific paper will say the data in another paper is extremely strong and likely true, but it could certainly demonstrate that and reference the Lombardi et al paper.

    I'd kinda like the Lo/Alter paper to say causality is proved, but I don't think we're there, yet. I do expect them to say something to effect that the association is very strong.

    I suspect that, as someone said earlier, they might not talk about blood supply issues, if asked to tiptoe around that issue, but they kinda have to tell the truth about the infection rate in the control sample. I suppose they could have found less than 2% infection rate in their controls, but even so, that wouldn't stop me from celebrating.

    If they haven't independently confirmed the Lombardi et al findings, then the paper is a dud, no doubt about that. That would certainly quash any potential celebrations. :sad:

    ps I think George is female, but I have to say I have not personally verified that info :eek:
     
  5. eric_s

    eric_s Senior Member

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    If the WPI has that kind of friends
    i don't think someone in the CDC or DHHS could do much. Congress can investigate what goes on in the executive branch. They (people in the CDC or DHHS) would not get away with it, if those senators and representatives really are on "our side" . At least that's how i feel. But i don't want to promise too much, so let's see the paper :innocent1:.
     
  6. muffin

    muffin Senior Member

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    My husband says an Embargo means it is coming - as a 'general rule"

    He says a press embargo is meant to keep the lid on for a big splash. He says that's his guess and only because that's what they have done to his major studies - NO real publication knowledge.

    No press embargo means nothing to print. An embargo means something is coming out and they want it kept under wraps until they can make a splash. However, he says don't quote him and a "splash" may not be the case. It may be that they embargoed because they don't want people to find out if there has been something done to the papers.
    So there you have it. A big splash that may be super positive or may be not so positive.

    Thanks Mindy! Great job as usual.
     
  7. muffin

    muffin Senior Member

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    Eric_S Said: "i don't think someone in the CDC or DHHS could do much. Congress can investigate what goes on in the executive branch. They (people in the CDC or DHHS) would not get away with it, if those senators and representatives really are on "our side" . At least that's how i feel. But i don't want to promise too much, so let's see the paper."

    Yes. Let's see the paper first. But, if "they" have messed with the paper, Congress and the WPI friends will be involved. This I do assume.
     
  8. eric_s

    eric_s Senior Member

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    It seems Dr. Monroe does not really like to answer questions.. i think if the Alter paper comes out positive he will have to answer some more :tongue:
     
  9. Lynn

    Lynn Senior Member

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    It is probably unlikely that Alter will say that we were misdiagnosed. I think before they could say that, they would have to prove that XMRV causes illness.

    Lynn
     
  10. ahimsa

    ahimsa Senior Member

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    LOL at the "leaves, birds, dogs" comment! (I'm a cedar waxwing, actually, if you want to get more specific!)

    I've been a forum member only a bit longer than you, urbantravels, and I never know whether to use he or she, either! I try to avoid the issue by rephrasing the sentences and calling folks by their screen name only. I guess I could try using one of the new gender-neutral pronouns like ze or zie but I never remember them and I think it might come across sounding too affected.

    For future reference, I'm a she, named Marjorie (I've put that under my screen name since I could not think of a short, pithy phrase to replace "senior member"). But I don't care what pronouns folks use!
     
  11. urbantravels

    urbantravels disjecta membra

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    I realize my avatar is not all that gender-specific either...a tiny, brave artist's dummy being menaced by a large red Pentax digital SLR.

    Unless you can figure out how girly it is to have a digital SLR that is RED instead of sober serious-photographer black.
     
  12. Sunshine

    Sunshine Senior Member

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    Hi Lynn. I'm going to follow on from what you said, however, I am not criticising or correcting you don't worry!

    So on the topic of proving XMRV causes illness. A bit of recent history. Simon Wessely and Myra McClure said they wanted to ''protect the public'' by rushing their 0% Negative XMRV study in CFS out, a study that took weeks to make. Not months, but weeks. Looks like they actually damaged the public by being too keen to say the public health disaster joke of the year.

    ''We are confident that our results show there is no link between XMRV and CFS at least in the UK'' - McClure
    ''I'm done with this'' - Kuppeveld
    ''It doesn't explain Childhood Trauma'' - Wessely in a newspaper interview.

    I am so glad they said these words, their arrogance and ignorance of science defines them, and for ever in the history books too. How idiotic will someone look by stating 'There is no HIV' and a year later HIV is announced to have been found in very high numbers in sick people? How could anyone conclude the fact there is no XMRV in CFS, when the virus hadn't even been studied yet? Who else has the audacity to conclude in a few weeks they are correct, and the entire scientific community who hasn't even had a go at looking for XMRV, is wrong?

    Thankfully, the WPI are full of skilled and honourable people.

    Logically what Wessely and McClure didn't read in their 8th grade biology book is all human exogenous retrovirus cause illness.[/U] (HIV, HTLV), so XMRV should follow, especially if XMRV is suddenly found in persons with CFS, whom 25% are wheelchair or bed bound and the average person has the same disablity level as end stage AIDS, COPD, and heart failure. Knowing this, Wessely and McClure where not only wrong but blind to CFS research that is well known and printed for decades. Politics was the reason for their arrogance, and they sold out, destroying their academic reputation as reputable scientists and psychiatrists. Their choice, not ours. All water under the bridge, and their relevance in XMRV research has gone as it never started.

    Wessely & McClure, Reeves, Kuppeveld you are the weakest link, goodbye.

    For the sake of argument and scientific methods of calculating evidence we'll use science instead of logic. To parrot Judy Mikovits, all human exogenous retroviruses cause: cancer, immune suppression and neuro disease. Well defined CFS follows these rules, yet we are lead to believe by the CDC that XMRV is not in people wtith CFS as is shown by the new CDC website on CFS. Lets see if that's a true statement by the CDC, or a true statement by Judy Mikovits proposing that XMRV should be no different to causing disease just like the other two exogenous human retroviruses:


    *************************************************************************

    CFS is a neuro disease (when using CFS as a name for ME) and XMRV has been found in CFS at 98%.
    1-0. Mikovits. Failblog CDC.

    Cancer is raised in CFS (Thyroid and Mantle Cell).
    1-0. Mikovits. Worrying for an alleged hysteria treated with CBT....

    Cytotoxic NKC in CFS are WORSE than AIDS & NKC function is poor. There's your immune supression.
    1-0 Mikovits. Very Interesting and explains a lot.


    *************************************************************************

    So Mikovits 3, CDC, 0.


    Actual published Evidence on XMRV in CFS:

    XMRV causes illness shown by the % rate that was discovered in the Science paper of CFS people (Fukuda and Canadian Concensus Definition CFS) shown to the public in October 2009. The original SCIENCE cohort when using 4 methods to detect XMRV, found XMRV in 98% of the patients - this was not shown in the original SCIENCE paper - it was 68%. After publishing, the WPI improved their testing methods and found much more XMRV in the same people. In other words, WPI detected XMRV in virtually all of their Fukuda and Canadian Consensus Definition CFS patients. That was certainly an Ohh My Lord moment if there ever was one. Now lets look at XMRV in people without CFS............

    98% of SCIENCE cohort CFS patients

    Vs

    XMRV in just 4% of the healthy population and only 10% of the immune supressed population.

    A huge difference.

    If XMRV doesn't cause illness, why would the CFS population been (almost) universally infected with XMRV? Another 'mystery' cause? School phobia maybe? Childhood trauma? Addiciton to 'The View' with Whoppi Goldberg?

    Near 100% hit rate for an infectious retrovirus with no previous diagnostic test, is a diagnostic marker. Hence the panic at the CDC by bringing out an useless XMRV study that found ZERO percent in people who were diagnosed with tiredness over a telephone. :rolleyes: That was not wise, but they had no option after blaming patients for being 'psycho-neurotic' (Thanks CDC's Dr Strauss). Honesty and saving face, rarely goes together.

    Incredible work by the WPI. Lets theoretically downgrade the 98% to 80%. 80% is massive and is still diagnostic. Talking of 80% this is the Alter paper XMRV replication study result whose patients were not diagnosed using the expertease of the WPI who can spot a neuro immune disease patient, vs a 'CFS' criteria patient that is a very poor criteria. Did Alter use all 4 methods the WPI used? Who knows. Increase the expertease of knowing what a neuro immune disease patient actually has in terms of 'signs' (e.g. Cytokine abnormality, Dysautonomia, etc) and logically the % rate increases.

    Mike Hillerby, Vice President of the WPI said on the radio that WPI (Or did he mean VIPDX?) had 80% of 1000 people testing positive for XMRV. That's more people who simply presume they may have XMRV and sent their blood in. :cool: That should have the CDC running for the bomb shelter in preparation for when we walk into the fields attach a giant rubber band (to the nearest weight lifting cow with a strong back) and fire a salvo of Prozac back at them. Incoming!!!!!!! :tear:

    Imagine non diagnosed HIV (If HIV was discovered by the WPI) people presume they have this new thing called HIV, random members of the public. Yet 80% happen to 'guess' correct and it comes back indeed positive for the illness that is proposed to be linked to their virus by the WPI and told to be in your mind by the CDC. Again, the rates are far too high for HIV to not being causing disease, just like XMRV in the case of CFS.

    Another example of the significance of the high % rates of XMRV finding in CFS here would be MS diagnosis. 'Detecting' MS is not as clear cut and easy as it may first sound. MS needs evidence of CSF abnormalities/or MRI abnormalities in conjunction with classic MS 'events' proved by a medical doctor just to get a diagnosis. Take out the 'observations' by a doctor of an MS event, and the % rate of MS would be less using just MRI and spinal tap alone. Again the % rate of patients sent by the doctor with 'suspected' MS to hospital for further testing, are no way near 80%. Many people with suspected MS, never quite make the diagnosis and linger on the fringes of being accepted. Some get a diagnosis of ME instead, or even somatization disorder if the paralysis is considered 'fake'.

    Doctors 'suspect' MS, and send for exclusionary tests and of course the % rates is never 80%.

    Yet

    WPI 'suspects' XMRV is in CFS patients, sends for a first research style blood test ever made and hits 80%+ on the first go.

    :D

    Get the criteria stringent, take a history and other bloods, and the rate shoots up to 98% even in 2009/10. Imagine someone devised a test for MS, and in it's infancy, were getting 80% hit rate using just blood alone, and no other agreed stringent diagnostic criteria. This is what the WPI have achieved. It's truly remarkable. Again I'll repeat, the 'give away' sign that XMRV 100% for certain causes human disease are the stunning figures of:

    *************************************************************************
    80% (Alter via how many methods?) to 98% (Science via 4 methods) of people with CFS test positive for XMRV.

    Vs

    10% of Immune Suppressed.
    4-7% of healthy test positive for XMRV

    *************************************************************************

    A bunch of sick ill people with the same cluster of symptoms, all testing positive for a retrovirus, at 80-98%, in infancy of ability to detect this retrovirus? :Retro tongue: They obviously found the cause, as the figures will only rise as the testing method and VIRUS RESERVOIR (Probably CNS), are found. Find the virus reservoir, and the % rate climbs much higher and will become universal, e.g. 100%.

    As in Diabetes.

    We don't look for Diabetes in nail clippings, but blood and blood after a certain set of protocol (fasting blood sample), and then repeated. Currently in XMRV, we have no idea where to look, and WPI hit 98% and Alter 80%. Just think what % rate we will reach eventually? :)

    Even if the Alter paper is (pun not intended) Altered.......... WPI wil continue and continue to offer tests to the general public to help diagnose us 'remotely'.
     
  13. Lynn

    Lynn Senior Member

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    Hi Sunshine,

    No worries. You are preaching to the choir. I was pointing out that in his paper, Alder is not likely to jump to causation of diease by XMRV. I understand there is quite a little dance to prove causation. I agree with you, that it shouldn't be a big leap from

    the prostate cancer and CFS patients have Xmrv -
    to oh my gosh, look how sick these people are -
    then ultimatey to -
    XMRV does cause disease.

    But I don't thing Alter will address causation in his paper. His job is to prove correlation, not causation.

    And personally, I like the idea that I could have been misdiagnosed all of these years. Seems like a great path forward and out of CFS hell.

    And if I do have XMRV, and I get healthy again, I will be back to help find the other viruses that also cause disease in people who don't have XMRV but still have CFS!

    I see that I am writing gobbledygook. I hope you get the basic point.

    Lynn
     
  14. Cloud

    Cloud Guest

    Lol, Leaves, birds and dogs....what else? My Avi is a warrior named Cloud from the animated series Advent Children. I relate to his personality so he's my alter ego in animated form. Hey, if we get to choose between being animals, birds, vegetation, or whatever.....I'm gonna be a superhero because he always gets the girl.
     
  15. caledonia

    caledonia

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    I agree, we at least get a diagnostic test out of this (which is HUGE!!!). Imagine this - you go into the doc with fatigue, he runs a bunch of tests, and instead of "I don't know what you have" - you actually get a diagnosis right away. HUGE.

    Your other thought is also interesting. If there are any people "left over" who are not XMRV+, perhaps they will become so with more improvements on the testing. Maybe we don't need to find another retrovirus for them.
     
  16. Megan

    Megan Senior Member

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    Thank you Mindy! Good to hear from PNAS on this, I think.

    By my calculations, if the paper is not out by the 31st August it will be too late for for the XMRV conference on 7th/8th September. Surely this would have a real impact on us in terms of slowing down the science? From this perspective it is disturbing that the PNAS editor says he does not know when it will be published.

    If it comes out after that, it will look as though this was designed to happen. Surely the editor could have provided this reassurance?

    As a patient I have only one concern and that is that the science on this progresses as quick as it can.

    Once again, I say if pressure is to go anywhere, it is to go on to PNAS to get the publication out PRIOR to the XMRV conference.
     
  17. leaves

    leaves Senior Member

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    :) that makes sense!
     
  18. biophile

    biophile Places I'd rather be.

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    A great post, Sunshine.

    Like this unfortunate person, Casper Schmidt?

     
  19. taniaaust1

    taniaaust1

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    For myself that would be to show that this virus is WAY more common in us then the normal population. I myself dont think its the sole reason why we get CFS/ME, Im one who thinks it may prey on something with our immune? systems which is different or needs to be coexisting with something else for CFS/ME to occur. i just cant see it as being the full answer (ive been let down too much over the years to believe the virus is the whole cause of our issues)

    A virus being found in most of us will show that we a really do have something very wrong with us.

    umm thou im not sure that im happy that its a retovirus which maybe cant ever be fully cured.
     
  20. SOC

    SOC Senior Member

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    The article linked by biophile, http://en.wikipedia.org/wiki/AIDS_denialism, is a very interesting starting place for ME/CFS advocates to learn about the next stage of the fight for legitimacy. We've already discovered the damage that can be done by poor science and pseudoscience as it was applied to HIV-AIDS. This article outlines the damage, the techniques, and maybe even some of the names we may face in the next stage.
     

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