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News of replication of WPI XMRV study...

Discussion in 'XMRV Research and Replication Studies' started by Wildaisy, Nov 26, 2009.

  1. dannybex

    dannybex Senior Member

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  2. Sing

    Sing Senior Member

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    Reply to Cold Taste of Tears

    Thank you Cold Taste for your truthful rant--I identified a lot with your feelings and experiences. These words of yours particularly struck me:

    " - because CFS is 'unexplained' chronic fatigue. Doctors take advantage of this, as well as patients, as well as health agencies. It's a free for all. An orgy of deceit....Currently it's a clown disease, and clown science.
    My nose might be red, but I'm not jumping through hoops any longer to applause."

    Like you, I too feel outraged by the fraud all around, but the only thing for it is to be stronger and clearer in my own honest presentation, and to support others who are being honest and courageous too. We are not being handed the keys to our jail cells by anyone yet but have to start ourselves with powerful, honest voices.

    Cecelia
  3. anne

    anne Guest

    You know, I just understood something that I didn't before. I'd heard that sickest of the sick quote, but then their official sample seemed to say something else. But she says, "We simply did a screen of..." She used those samples to see if there was a virus. But the samples used in the study came from doctors all over the country and the only criteria used were the Fukuda and Canadian Definition. The interview above seems to say they looked for it in the worst samples, and to "confirm the finding," they did something more broad.

    The "simple screen" was preliminary.

    Cold taste, yes.
  4. dannybex

    dannybex Senior Member

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    GOOD POINT! Thanks for the clarification.
  5. anne

    anne Guest

    I seriously didn't understand it until looking at that interview, and had been really puzzled by the contradictory information that seemed to be coming from the people who actually did the study. So I'm really pleased you posted that. :)
  6. Marylib

    Marylib Senior Member

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    For Cold

    Well said Cold. I think we can put that post in our "classics". If we had one of course.

    By the way, I loved the part about the bit of compassion shown to you by the drunk, offering his bed and all. Would be nice if compassion were contagious.
  7. Smulan

    Smulan

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    Hello,

    Im a swedish guy with CFS/XAND and like most of you I try to follow the XMRV-development. Searching the net I came across some quotes from Judy Mikovits, first:

    "We also have data showing that the virus attacks the human immune system," said Dr Mikovits. She is testing a further 500 blood samples gathered from chronic fatigue patients diagnosed in London.

    "The same percentages are holding up," she said.

    http://www.nzherald.co.nz/health/news/article.cfm?c_id=204&objectid=10602278


    and this one from a local Reno paper:

    "Mikovits said the Whittemore-Peterson Institute is working with officials in other countries who want the blood samples of their patients tested for the retrovirus.
    “We’ve got about 500 samples from the United Kingdom, and we also were approached by the head of the the syndrome organization in Spain,” she said. “We eventually expect to collaborate with many other countries: Norway, Germany and others. Everybody is asking if we can test their samples and asking how they can get in the clinical trials.”
  8. Marylib

    Marylib Senior Member

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    Welcome Smulan

    Welcome "Swedish guy" :)

    It will be great to have your perspective here on the forum. Tis a small world...
  9. fds66

    fds66 Senior Member

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    There are some statements about the samples used on Whittemore Peterson's own website.

    From http://www.wpinstitute.org/xmrv/xmrv_qa.html

    FRom http://www.wpinstitute.org/research/research_biobank.html

    I was confused too for a long time about statements about picking only severely affected people but this seems to suggest they were random samples from their biobank.

    Hope this information is helpful to someone. It took me ages to remember where I'd seen the phrase "chosen at random"
  10. Smulan

    Smulan

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    Thank you Marylib! I will try my best to cover the replication study thats going on here in Sweden. :)
  11. _Kim_

    _Kim_ Guest

    Hi Smulan

    You're just in time. I was trying to read Frn ME/CFS-seminariet p UMAS i Malm 12 november., a report about the lecture given by Dr Byron Hyde and Kenny de Meirleir in Sweden on November 12th.

    I used Google translator to read the report, but it wasn't very helpful in understanding what de Meirleir said about XMRV. Would you do a little translation on that part for those of us who don't speak Swedish.

    Thanks (and welcome!),
    Kim
  12. Smulan

    Smulan

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    Thanks Kim!

    Here is a try sum up the essential in prof. Kenny de Meirleirs lecture.

    First he talks abot the history of the CFS/ME and where we are today. Even though there are over 5000 studies that shows that ME CFS is a biological condition still many belive/argue that is a psycological condition. That has never happen before with any other condition!

    Science today looks on gene expression, proteins and infections. He dont belive that there will be a single explanation for CFS/ME.

    When it comes to treatment he thinks that dr Enlanders study (note yet published) is the most interesting right now. This treatment include B12, Folatic? acid and Kutapresin. 63 % felt better compared to 17% in placebo.

    Then he talks about food, genetic etc that ends up in a conclusion that many people with CFS/ME gets higher than normal levels of a toxic gas H2S in the stomac. This gas has a negative effect on the blood abillity to transport oxygen and it can be messured in the urin with a simple neurotoxic metabolit test. Me/CFS patients often has elevated levels of this gas and tests that has been done in Norway on very sick people veryfies this.

    On the recent XMRV finding Meirleirs states that it is to early to say if it is the virus itself that cause CFS or if its there becuse of some problem with the immune system. We have to wait and se near future studies on this he says.
  13. anne

    anne Guest

    This is rampant speculation, and I have no grounds for any of it. But isn't part of the attractiveness of XRMV that it can explain some of the different manifestations of this disease? Because it affects the immune system, which then allows in other pathogens that cause different problems in different people?

    I'm offering anecdotal evidence here, and it's only in the spirit of anecdote. I had CFS before I met my husband. I had a relapse while we were married and recovered in 2005. He was diagnosed with mono in April 2008 and hasn't gotten better. I clearly gave him CFS somehow. Our cases, though, are pretty different: I had VERY gradual onset and he had the flu-like onset. I had horrible orthostatic symptoms and he has none. But our key labs--RNAseL numbers, NK cell counts--are very, very similar. Somehow, the way the causal agent works (whether XMRV or no) created differences in the way the disease manifests.

    Again, purely anecdotal.

    You are right, but I'm going to choose to wait impatiently!
  14. fresh_eyes

    fresh_eyes happy to be here

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    The fact that a new CFS/XMRV task force was formed at HHS in recent weeks makes the rumors that point toward confirmation more plausible, imo. Wanda Jones said sometimes there are 50 people on their conference calls - surely not talking about what a flop XMRV is turning out to be.
  15. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Well

    There is so much here to comment on. And I am not very alert mentally.

    But let's see.

    First, I am glad they chose the sickest of the sick. As someone here said, many with diagnosis of CFS will not have a virus cause to their illness. Plus, it is possible that maybe this virus can also go into a latent or dormant stage. And the person may have CFS symptoms from the aftereffects, say an immune system gone awry, even though XMRV has been brought under control. One might expect that that person would not have the symptoms as severely as someone in an active XMRV infectious state. So, you could say that if WPI chose any patient with a CFS diagnosis, then the results would MORE skewed because they would have included ones with other illnesses, including psychiatric ones. And they would have included people who have the aftereffects, which would not help them in finding the virus, which was their goal.... see if the virus is there. This way, the only used ones with indisputable, true CFS and show signs of an active infection, if there is an infectious cause. They didn't include the cancer ones either. So the "not panning out" may be that others are using the broader definition in the cohort or those who had an infection, but not at the moment. Also, usually, they will separate them out in doing the study, usually in groups of 20-35. Then they will keep up with the results in the subgroups. I know CDC claimed it is including some WPI samples in their study. So they may see different results in the WPI samples than the ones of their own collection. But that should be documented.

    Second, I would expect the CDC and other government agencies using the broader definition for their cohort will find a higher incidence of XMRV in their collection than healthy controls, but not as high as the cohort in the WPI study. Maybe they find 40% with active virus...?

    Third, the study has already been verified by National Cancer Institute and Cleveland Clinic. They were co-authors, that means they banked their reputation on the information. So, there is definitely something there at an increase in the sickest of the sick of "CFS" patients. Cause not established, but definitely a retrovirus in greater incidence among them than healthy controls.

    Now, remember this, as DeFrietas knows, viruses are not that easy to find in a microscope. It's not like you take a sample, put it under a microscope, and if the virus is there, the person has it and if they don't, the person doesn't. Ability to find a virus is determined by the level of infection. So narrowing to the sickest of the sick saves time and money. They are the ones who likely have more of the virus, thus it will be easier to find it, if it is there. Especially if a virus can go dormant, or the immune system has a response to it, you have to look for it. Think of how long it took them to find HIV in the blood of people with AIDS. Common sense would seem to indicate that you take the blood of an AIDS patient, put it under a microscope, and you should see, "Hey, there's a new virus in this person's blood that I haven't seen before." That's not the way it happened because viruses are very elusive. You can look at 100 cells and it not be in any of them, then you look in the next one and there it is. It's like looking for a needle in a haystack for some viruses. And as Defreitas said, some viruses will show in the blood for six days and then disappear. So this is not a simple, clean science. Even pap smears have probabilities of false negatives and false positives. Take that into account when the results for other researchers come in.

    Tina
  16. dsdmom

    dsdmom Senior Member

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    Cold Taste of Tears, I definitely appreciate your thoughts on this. My only concern is that if the new studies do not replicate the WPI findings as far as percentages, a causative relationship will not be pursued. I would then envision that docs won't treat XAND even if you are XMRV positive because it will be said that "healthy controls have XMRV and therefore it could not be causing your problems."

    So that even if we know we are xmrv positive and it is causing our problems, the medical community at large will not act on it because the studies did not show causation. Which would also mean that drug development, etc would not happen. Sure if you could find a doc to use existing drugs on you that is a possibility, but again, only if they, too, are convinced outside the studies that XAND exists.

    So I hate to say it, but I think we do need these studies to come back as WPI sees it if we want treatment and/or drug development. And it scares me to know the types of samples they are testing. And the rumors that are circulating already that studies are not jiving with WPI's results.
  17. PoetInSF

    PoetInSF Senior Member

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    The continued unavailability of patient sample profile baffles me. True, their samples may meet Fukuda/Canadian criteria. But they are not random samples from Fukuda/Canadian CFS population. They are selected from outbreak areas and therefore it is Fukuda/Canadian/WPI criteria, not Fukuda/Candian. Seems to me, it's better to suppy them to preempt any controvery with other replication studies later on.
  18. Esther12

    Esther12 Senior Member

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    What I understood from the posts here was that the WPI had initially focused on outbreaks to identify XMRV, and had then moved on to random samples from Fukuda/Canadian to test the connection.

    Previously I'd thought the entire research had been focused on those from outbreaks of CFS though, and I may have just misunderstood this thread.
  19. Christopher

    Christopher Senior Member

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    What's the basis for the rumors? I haven't seen anything besides word of mouth on here, and it's a waste of energy to comment on such rumors.
  20. Koan

    Koan Be the change.

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    I agree. We could get a good rumour going right here if something passed through a few threads and a few heads it would start to have legs.

    :rolleyes:

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