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William Switzer - CDC looking for XMRV and MLV in lab workers!

Discussion in 'XMRV Research and Replication Studies' started by CBS, Mar 4, 2011.

  1. alphahusky

    alphahusky

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    Right

    But that's my point. The spinning that this is just a contaminant or that it can't be linked to illness is kind of out the window when someone repeatedly trying to play it down admits to at least testing himself once, and that there are concerns about lab workers. If it causes no illness, then who cares if they've got it?
  2. Kati

    Kati Patient in training

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    I am a bit late in the conversation, but what bothered me on top of being worried about lab worker is at that same Q&A period this lady from the audience commented on the similarity of HIV deniers and ME/ CFS XMRV + Patients on ART. Basically she said we were all fruitcakes.

    all they want to say is ME/ CFS is not an inFectious disease but what Lombardi et al. Saw was contamination. However their lab workers may be infected with a very virulent retrovirus. Do you see the dismissall all lover again?
  3. currer

    currer Senior Member

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    Yes they didn't show much empathy for CFS patients. I felt rather insulted by that lady's comment too. Its not a joke to be ill for years, they clearly don't relish even the smallest chance of illness for themselves.
  4. alphahusky

    alphahusky

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    Exactly my point. He's trying to say there's no relation to ME/cfs, yet he wants to make sure *he's* not got it.
  5. Cort

    Cort Phoenix Rising Founder

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    It depends if he gets sick or not. If he's not showing any effects then I assume that he won't do anything. It'll be interesting to see if any of these CDC employees show up with any illness. We haven't heard anything about that yet.

    If he gets sick -then his choice of treatments will be very interesting, indeed.

    I assume that CBT/GET will not be his first option. :)
  6. Cort

    Cort Phoenix Rising Founder

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    From their opinion it is not linked to any illness - because when they tested two groups of patients - one of which did have a WPI like cohort - they didn't find any XMRV. So from their stance they don't have any reason to believe it causes a certain disease.

    However, it is from a retrovirus and a retrovirus family that can cause alot of problems, and it has shown the ability to quite a few different cells - so the potential is definitely there. Just on the basis of that alone I don't think you can ignore something like that. If they determine that some people have an XMRV infection they have to follow them.

    As they noted its also acting strangely - which is kind of good news - I imagine, because they'll want to pin down what's going on - which means more study.
  7. CBS

    CBS Senior Member

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    That would be Dr. Jeanne Bergman of AIDSTruth.org and apparently the former director of planning and policy research at The Center for HIV Law and Policy (HCLP).

    Quite a few people in the room got a good laugh. I guess it was one of those "you had to be there" moments. I didn't get the joke.

    It seemed like her intent was to distance the HIV community as much as possible from the CFS community by trying to dismiss us as conspiracy theorists (hmmmm, why is that ringing what seems to be such a recent bell?). Maybe it's just my being a bit dark at the moment.

    FWIW, I did write her yesterday and ask that she explain the joke to me as I apparently missed the point unless it was just to denigrate CFS seriously ill patients.
  8. Kati

    Kati Patient in training

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    no no, Shane, it's just not you, it's indeed really dark out there.

    coupled with the NIH education day featuring Fred Gill talking about psych disorders errrrrr ME/CFS, well one would thing it's all a big conspiracy to make sure ME patient don't get the care they need any time soon.
  9. cigana

    cigana Senior Member

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    If you ever get an explanation please let us know.

    It's yet another testament to these scientists' utter lack of connection between what they study in the lab and human suffering. I was actually in contact with a scientist at the conference who believes Deckoff-Jones' recovery could be explained by the placebo effect - what does that tell you about his comprehension of the degree of severity of this condition?
  10. currer

    currer Senior Member

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    Cigana, this is why I will always support the WPI, even if XMRV does not work out. Because they are studying CFS/ME, understand the reality of this horrible illness and are trying to find treatments for it.
    The liklihood is that they will develop insights which will enable them to make a breakthrough.
    The CROI virologists are involved in purely negative studies and once the've wrapped their studies up they'll be off.
    We won't be getting any help from them.
  11. Jemal

    Jemal Senior Member

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    I think it's likely it takes a long time, before you develop any illness. By the time someone gets ill, it will be hard to make a connection to an earlier event or a pathogen. So he might not even make the connection...
  12. Dreambirdie

    Dreambirdie work in progress

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    This is disgusting. Invalidating the suffering of CFS patients is really quite unconscionable.

    Bergman should be called out for this. SHAME on her!
  13. alex3619

    alex3619 Senior Member

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    Hi dannybex, there are two separate issues I think. It is not very infective between people, but once you are infected it infects every susceptible tissue very quickly.

    There have been cases of developing ME/CFS after needle stick injuries involving patient blood.

    They are also likely to spin this as: yes, some lab workers might be infected, but we do not yet know what this will do.

    Thanks for this thread CBS. I have had this discussion with a number of members in chat, and have begun discussing it behind the scenes. It was past time this was discussed publicly.

    Also don't forget that Coffin agreed that ME/CFS patients should not donate blood due to viral risk.

    Bye
    Alex

    ps One comment that came up a few times in chat was to the effect they hope Stoye wasn't using his own test for XMRV when testing his blood.
  14. Cort

    Cort Phoenix Rising Founder

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    I just saw it...it was an unbelievable comment - it was actually worse seeing it than reading about it. She basically said people who thought they were XMRV positive were nuts...I can't imagine how she got to be the director of anything with remarks like that. It was a really bizarre comment.
  15. alex3619

    alex3619 Senior Member

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    Hi, these are actually good points. It shows that the sequence they are looking at in the sample is probably recent. I am still thinking about what this means. It is just the beginning of the debate however.

    Bye
    Alex
  16. alex3619

    alex3619 Senior Member

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    Hi SilverbladeTE, there are many good people in the public services, but they may most often be at lower pay scales. There is something about public service internal politics that disquiets me - and I am speaking as an ex-public servant.

    In Australia at least, all public servants are required to sign some form of secrecy agreement - so no, don't ask me about disturbing things I have seen or suspect, but I can discuss general issues. I never saw enough to be more than suspicious, not enough to be able to prove anything, and you don't speak up without real evidence, as the system will crucify you. Whistleblower status is only good if you can prove what you say.

    For something bad to happen, it only takes a small percentage of high pay grade decision makers to be willing to do evil for it to happen. The have power over those below them, who have power over those even lower down. Everybody has signed secrecy provisions. People are intimidated. Whistleblowers do sometimes come forward, but I suspect its those who have seen more than a glimpse of what is wrong, and had a long hard look.

    However, here is the flip side - a small percentage of millions of government workers is still a lot of people.

    What I believe happens, and this is just a personal belief, is that the truly dangerous people are rare, but the size of the public service (including military, police etc.) is so huge that things can happen. Those who do these things probably vet their staff well - I would look for shady dealings in organizations that have a high staff turnover rate, because they will transfer or fire anyone who does not toe the line.

    Bye
    Alex
  17. alex3619

    alex3619 Senior Member

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    Hi Cort, Hue could be right or very very wrong. It was not a large study, they did not look at diverse XMRV strains I suspect - there is a claim that XMRV and PMLVs have major diversity in patients, but it is not published. All the unpublished papers that are claimed to be sitting at the WPI need to be published somewhere, and if they can't find top journals, they should be publishing in lower ranked journals.

    If you use a test can only find a narrow range, and the range of the patient samples is small, all you will find is a narrow range. Most of these studies are just indicative, and then follow with "nudge, nudge, wink, wink" arguments that imply possible conclusions, without actually proving them.

    The technology exists to develop definitive findings on XRMV, but the funding is not there, like always. If either side had more funding, the quality of data would be very much better, from much better experiments.

    Bye
    Alex
  18. alex3619

    alex3619 Senior Member

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    Hi Lynn, wait a sec, I will put on my denier hat.

    It does not explain it. This virus is new. Ergo, XMRV does not cause CFS.

    Taking off my denier hat now. Damn that was unpleasant.

    Bye
    Alex
  19. alex3619

    alex3619 Senior Member

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    Are we there yet?

    Hi Cort, these are very complex arguments, and we have almost no data in comparison to what will exist in a few years when we have definitive results. I do understand how hard it is, and why people can have a wide range of views. I also like dissenting views - this issue is both so complex and so important that every view needs to be examined, and every new study.

    I also agree that the upcoming blinded blood tests from the BWG will be very very important. I keep wanting to say: are we there yet? Are we there yet? Are we there yet?

    Bye
    Alex
  20. Dreambirdie

    Dreambirdie work in progress

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    I think we ALL should write Bergman. That remark was really quite reprehensible.

    HERE IS A LINK TO AIDSTRUTH.ORG


    http://www.aidstruth.org/contact

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