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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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CDC XMRV Retrovirology Study on CFS Published

Discussion in 'XMRV Research and Replication Studies' started by KFG, Jul 1, 2010.

  1. Alexia

    Alexia Senior Member

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    Bob, I find your ideas interesting and it makes sense. I agree that it is an optimistic scenario but it could be true.
     
  2. judderwocky

    judderwocky Senior Member

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    You appeal to the pharmacies the same way you appeal to any thug drug dealer... you sweet talk them, and tell them how much you want to buy their wares.
     
  3. bullybeef

    bullybeef Senior Member

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    My optimism has renewed vigour due to the CDC study not being reported on by any national news/media. It is clear to see the leak study has only added to the question mark regarding XMRV. If they did report on the CDC neg study, they would have to report on the NIH/FDA leaked study too and why that is was unpublished/delayed, and at that would be too balance a view were ME/XMRV is concerned.
     
  4. Cort

    Cort Phoenix Rising Founder

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    That's an interesting observation...it is possible that they met both - they had more samples than they used; its possible that they purposefully took samples that fulfilled both definitions. In fact I would imagine that this is what they would do since the empirical definition has turned out to be such a loser, and nobody trusted it. Why add that factor into the equation? I assume that they took samples from empirical definition patients who also fulfilled the Fukuda criteria.

    What they didn't state was that Wichita samples probably came from people who fulfilled the Fukuda criteria several years before their blood was drawn but not when their blood was drawn. When they got around to drawing the blood of those people they found that many of them no longer met the Fukuda criteria. They were definitely a "CFS-Lite" group.
     
  5. Cort

    Cort Phoenix Rising Founder

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    I like the different viewpoints as well. I know Dr. Reeves did not want to find that virus but I can't imagine that the retrovirologists in the HIV/AIDS division didn't want to find a virus or the virologists in a Robert Koch Institute. Of course they would want to find it. Actually I believe the CDC as a whole wants to find this virus. They know how to deal with viruses - they work on viruses all the time - they spend a lot of money working on viruses.....

    On the other hand they don't know what to do about CFS... they do very little work on CFS but the subject gets a lot of heat....they spend very little money on CFS but its still a pain......CFS is a two decades long pain in their you know what. I think they would love to know what to do with it.

    Does Dr Reeves have a stake in keeping CFS at status quo? Absolutely he does but I don't think the rest of the CDC does. They can't be blamed for not finding XMRV... it was only found in 2006. XMRV is the perfect scenario for them to turn the program around without admitting too much guilt. It would be easy to do.

    There's a point in Osler's Web where the CDC response to the DeFreitas virus changes overnight. That's when Folks appears to be able to replicate her results. The Chief at the CDC says "this is what we do best" and the jokes stop and resources start pouring into Folks department. But Folks was never able to replicate the results again and it all starts up again and the resources fade. The point is that if the CDC feels there's an opportunity here - they will go after it; if they don't feel there's an opportunity they'll it shove into a corner and deprive it of resources. That's exactly what they've done with the CFS research program for a couple of decades..big disease that effects alot of people that gets hardly any funding.

    Sure there are people in the CDC committed to the status quo but the CFS program in the CDC is a very small one. Dr. Reeves has been running a very small program in a backwater of the CDC for 10 years. He has no power. How could he have any power? His funding has been cut virtually every year. He's a small fish in the big CDC pond studying a weird subject. He doesn't have any power. The HIV/AIDS group - now they must have some power.

    I don't think the CDC spends too much time thinking about us actually. Anyway I think their attitudes can change if they feel there's an opportunity - if they can fit us into normal ebb and flow of things. They can't even fit us into the right department. Right now we're in the viral diseases branch I think yet the CFS research team hasn't touched a pathogen something like 10 years. They're not even doing pathogen research on us and yet we're still in the pathogen branch! How crazy is that?

    I think the big problem in CFS is that nobody knows what to do with us? Is it a brain disorder? An HPA axis problem? A circulatory problem? Or all of the above? We got kicked out of the immune Institute at NIH because researchers are finding so many other non-immune problems. But we didn't go to another Institute - we went to a nothing - an 'Office'...... that has, again, no money! Nobody knows what to do with CFS. Its not that people don't like CFS or there is some conspiracy going on against CFS - I think the main problem is that nobody knows what to do with us. If they decided CFS was a psychological problem we'd be getting tons of money...but they can't even decide that.

    I think the CDC or NIH would love to be able to put CFS in a box and start working on it. Until they can do that they don't want any part of it - they consider it a waste of time (and career) but once they can do that I think they'll happy to work on it. The problem is nobody wants to spend the money to get to that place.

    Thats my optimistic pie in the sky take.

    I must say, though, that Dr. Vernon's critique is at odds with this idea :) :) I thought the study was well done except for those test tubes. I don't know how you can make that mistake....
     
  6. Sean

    Sean Senior Member

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    Agree with that.
     
  7. bullybeef

    bullybeef Senior Member

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    Chronology of the NIH/FDA and CDC paper scandal

    This is really worth keeping handy:

    http://brc4mecfs.blogspot.com/2010/07/chronology-of-nihfda-and-cdc-paper.html

     
  8. CBS

    CBS Senior Member

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    Cort,

    This is where I get on my cohort soapbox. Who is 'US?' No wonder it is such a difficult subject.

    We MUST stop comparing apples to kumquats! No wonder we're so confused, no one knows what they are studying. There is no shared language, no shared understanding. Patients, researchers and government agencies are still talking past each other - NO COMMUNICATION.

    The research community has had 30 years to sort this out and we're still getting studies like the CDC XMRV debacle. When are we going to stop looking to the CDC to address this issue in a good faith manner?

    Anything (past, present or future) short of the Canadian Consensus Dx criteria should be reclassified as a study of "persistent fatigue."

    Better yet, reclassify everything that meets the CCDxC as a study of ME.

    We can't wait for this to happen. It has to happen now. It needs to be THE top priority of both the IACFSME and the CAA.
     
  9. ahimsa

    ahimsa Senior Member

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    bullybeef, thanks for that chronology of events (it's hard to keep track of what happened when).

    I have a question about the patient sample used in the CDC study that could not find evidence of XMRV. Ignoring the other possible errors in that study (eg. wrong tubes used to collect blood?) I thought I read on one of the threads that of "CFS" patients used for that study only 50% had ever been to the doctor for their "CFS" symptoms and 75% of them had a gradual onset.

    Marjorie

    EDITED - I wish it were always true that the way to find information is to post that you can't find it, but that's what happened this time! I just found the information this article by Cort:

    http://www.forums.aboutmecfs.org/content.php?180-The-CDC-XMRV-Study-How-Not-to-Find-XMRV

    Cort called this "CFS-lite" but I really wonder how this can be any kind of CFS. Even patients with mild CFS symptoms generally have symptoms serious enough to check with a doctor. And serious CFS patients, even without insurance, would be going to the emergency room. Didn't even have symptoms serious enough to visit a physician? Hmmmm. It sounds pretty strange to me to call this any type of CFS.

    Note - I believe that these people are really sick. I just wonder if they all have the same thing. Seems to me that sub-groups is a much better idea than trying to put patients with such a wide range of symptoms and disability into a single diagnostic label.
     
  10. MaryAnn

    MaryAnn

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    Thanks bullybeef. This is a great list in chronological order, which clearly demonstrates irregular procedure and possible interference.
     
  11. alex3619

    alex3619 Senior Member

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    HI Bob,

    I hope you are right in post 386. I also suspect some of us who are xmrv- might turn out to have have one of the other MLVs Alter refers to.

    Bye
    Alex
     
  12. Mithriel

    Mithriel Senior Member

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    Reading the paper, it looks as if they used the same samples that they have been using for all the papers about child abuse etc. I saw no evidence that they carefully chose people with the old Fukuda definition as well as the revised one. Assuming that they went back to the old one because the new one is "such a loser" is a leap of faith with no evidence. How would they find people who fulfilled both definitions? They have published lots of papers using this cohort already and show no signs of thinking there is anything wrong with the revised definition.

    In fact by stating that anyone who has signs of disease, like the Canadian guideline patients, is actively excluded from having "CFS" they are coming out very strongly for the revised definition. Calling it the Fuduka definition and missing out revised is the usual ploy of using language to muddy the waters.

    Mithriel
     
  13. Angela Kennedy

    Angela Kennedy *****

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    In the words of Father Dougal Maguire:

    "He's right, you know. Ted."
     
  14. Angela Kennedy

    Angela Kennedy *****

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    Yes, thanks very much indeed Bullybeef for this chronological record of events.
     
  15. John Leslie

    John Leslie

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    I have evidence in the form of an e-mail that at least one member of the CDC team who published the negative study received 20 XMRV positive samples from the WPI in September 2009. This was before the Science paper was published. The CDC, therefore, had 9 months to develop a clinically validated testing method to find XMRV when it was right in front of them. They instead used "the CDC" method that they used for the study and could not find ONE positive out of the 20 positives provided.

    The CDC team then proceeded to use that failed testing methadology for the study.

    Did all the research team know that this method did not work on the positive samples? Did all the senior officials of the CDC know this? Did the reviewers of the study know this fact? Why wasn't this disclosed in the paper? Will all the people who have the same e-mail at the CDC do the right thing and report that this is occuring. Is this conduct legal or ethical? Who can ask the authors why they did not disclose this fact? Will someone go to jail? Should someone go to jail? They KNEW they couldn't find XMRV and proved it to the world. Who would do this? We know that before Bill Reeves was reassigned he designed this study and worked on this study. What other questions should we ask and when? Who knew and when?

    I am consulting with a lawyer on Tuesday. Thoughts?
     
  16. judderwocky

    judderwocky Senior Member

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    The petition has broke 400.... i really need people to post the link to other CFS blogs and groups if you can.... i'm having trouble getting into some of these other groups... people are naturally suspicious of outsiders.... if you are an insider anywhere... please encourage them to get the word out....

    the only way we are going to be able to combat the CDC's awfulness is to make a strong show of collective/organized response...

    if we can leverage just a bit more action and a bit more power... we can get more than the small 5 mil a year in research they throw at us.
     
  17. glenp

    glenp "and this too shall pass"

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    John

    Thank you so much for stepping forward with this information

    glen
     
  18. alex3619

    alex3619 Senior Member

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    Hi judderwocky

    I just posted your petition link to a very private group, I wont say who. Its up to them, but I think some will sign it.

    Bye
    Alex

     
  19. glenp

    glenp "and this too shall pass"

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    weeeeeeeeeeeee alex

    I have been trying too --posted on the ME group and prohealth and my yahoo messenger friends
     
  20. Stone

    Stone Senior Member

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    Along the subject line of not giving blood, I think we should make a public challenge to Reeves and his ilk to voluntarily put their money where their mouths are. I think we should ask them to sign a wallet card or advanced medical directive that they would be willing to receive blood from a patient diagnosed with CFS by a known CFS specialist. NOT that I'm proposing they would ever receive such blood (God forbid!), but I would love to hear what Reeves would say if he were on Oprah or 60 Minutes or something, and was asked if he would be willing to sign such a directive (which just happens to be on hand). I am NOT advocating any actual blood changing bodies, I would just like to see how he would respond to the challenge. I posted this before on another thread, but I think it would be much like that powerful scene in the movie, Erin Brokovich, when she tells the lawyers for the power company (who were denying that the community water was contaminated) that the very water they were drinking at that moment in the meeting had been brought in just for them from the area they falsely insist isn't contaminated. OF COURSE the water in the pitchers wasn't contaminated, but the looks on their faces was priceless. If you haven't seen the movie, I recommend it. Some of us can use a little pick me up like that right about now.
     

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