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National Cancer Institute Q and A on XMRV

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by George, Nov 18, 2009.

  1. George

    George Guest

  2. George

    George Guest

    Sorry

    First time to start a thread and messed up the X in what is suppose to be XMRV.
  3. Mark

    Mark Acting CEO

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    Not to worry George, I mistyped it as SMRV the other day, I think I got away with it though, turns out SMRV is a real retrovirus and it turned up the next day in the research article on XMRV escaping from labs to infect cell cultures. Who knows, maybe my typo contributed to somebody finding that?!
  4. George

    George Guest

    You make me laugh Mark

    Thanks! I was so excited to start a thread I panicked and messed up but, people where wonderful to tell me how to fix it!

    Thanks everybody!:):):)
  5. Koan

    Koan Be the change.

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    Laughing!

    And,

    thanks for the link!
  6. Mark

    Mark Acting CEO

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    Just read through this NCI Info. Useful to get a repeat view of the 'known science', but it's still frustrating that it's peppered with quotes to re-assure the public and downplay the situation. Like:

    "There is currently no evidence to suggest that XMRV is causing a spreading epidemic."

    Hmm...well of course as always it depends what you mean by 'evidence'. Here of course they mean peer-reviewed scientific studies. Meanwhile, back in the real world, XMRV is very probably a spreading epidemic. That's just much more likely than not, based on the CFS experience, the link with autism, the epidemic rise in autism, the work on potential for infectivity in the blood...all these factors, sadly, are inadmissible as 'evidence'. Perhaps it's one of those nice cosy friendly retroviruses that doesn't really spread itself about much, so let's not discuss it until we know for sure that it's an infectious epidemic...one global health crisis at a time, please...

    Anyway the part that most interested me, and the only snippet of new information, was the note that in the prostate cancer study, 6% of the 'noncancerous' controls tested positive for XMRV.

    Now I think someone (maybe John Coffin) stated at CFSAC that the XMRV the WPI are studying is a slightly different strain from the one in prostate cancer, or at least there are different gene sequences, so they may not have been studying exactly the same thing. The prostate study was looking at prostate cells not blood cells. And these studies are both very small and their estimates of the level of infection in the general population could easily vary by a few percent within the margin of error.

    BUT having used one's intelligence to think of all the clever ways the data could be wrong, surely taking a moment to reflect on the implications if the results are right is also a good idea?

    1. Taken together with the WPI's finding of a 3.75% in noninfectious controls, this 6% from the prostate cancer study is a very similar figure, so it's at the very least a good clue that 3-6% is a good estimate of XMRV prevalence in the general population.

    2. Perhaps the most important valid use of the 6% is that this figure points strongly against one possible weakness of the WPI study that's still being questioned in the public health information: the idea that the WPI's 4% in healthy controls might be caused by them drawing from geographically related areas to the infected patients. It's unlikely that the prostate cancer study had the same geographical ties.

    3. The thing that intrigues me most is that the details of the controls suggest something else as well. Suppose, hypothetically, that these two studies are both fairly accurate results within a few fractions of a percentage. In that case:

    - about 3.75% of healthy controls have XMRV
    - about 6% of noncancerous controls have XMRV

    The difference between these two groups is around 2%. That suggests that the percentage of the population who are non-cancerous but not healthy and infected with XMRV is roughly 2%.

    So: the figures so far suggest that 2% of the population have XMRV and are not healthy. Of course their ill health may not be related to XMRV. Then again, it may be that this 2% consists of people with MS, IBS, GWS and CFS/ME and various other illnesses of unknown cause.

    To put it another way: if CFS/ME is 0.5% of the population, we may represent roughly a quarter of the population who have XAND. Many of the other 75% may have exactly the same illness we have but with different diagnoses. But some of them may have some other condition, and identifying what that condition is would be the biggest step forward you could take towards understanding XAND. Who knows, the rest of the XAND population might have an important illness. ;)

    As I keep re-iterating, the first study I would undertake based on the evidence available so far is to test for XMRV in small populations of every ideopathic neuro-immune disease and find out which ones are linked. This is the obvious first thing to do if you are looking to find out the truth. Once again, Gulf War Syndrome is the most obvious and crucial test to do: I will be mighty relieved as and when I finally hear that such a study is taking place.

    Let's put it this way: you just found an overwhelming link between XMRV and an ideopathic neuro-immune condition. Er...have you got any other ideopathic neuro-immune conditions? You do? Lots of them and you haven't a clue what's going on with any of them? Oh, and their symptomology is so close as to make them all practically interchangeable diagnoses. Oh come on, I know you scientist dudes have no choice but to be specialists - that's the main reason I didn't join your ranks - but surely there's somebody out there who can see the wood for the trees?

    So anyway, let's take a leaf out of the spin doctors' books and see what they could have said instead of "there is no evidence that..."

    They could have said "The best guess we have based on the research so far is that 2% of the population have a previously-unknown immune disease called XAND (previously known by names including CFS, ME, FM, GWS, IBS, MS etc), and that a further 4% of the population are carriers for the retrovirus that causes it. We have no idea how the retrovirus is transmitted, it most likely transmits in the same ways as HIV, but there almost certainly must be other means of transmission as well".

    Of course, they don't want to cause a panic, and there we differ...

    And I do understand all the reasons to be cautious about drawing conclusions, scientifically, from very little evidence. But at the same time, come on! Look at all the evidence, in the round, and it does present a very clear and unambiguous picture of the most likely explanation. If you're going to spend most of your time explaining why it might not be true, please tell us at least something about what it means if it IS true.

    And for some bizarre reason, for everything else the authorities are saying, that bigger picture is the one thing that nobody seems to be talking about. Present company excepted, of course...
  7. Mark

    Mark Acting CEO

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    Out of the frying pan...

    So can we trust the NCI to think about this from a CFS point of view? Are they our new friends?

    They will study XMRV's "relationship to disease (CFS, prostate cancer, and potentially other cancers)". No mention of any other medical conditions, of course, because their job is cancer, fair enough.

    It's great that we now fit in with where the money's at, and we should hopefully find out a lot about XMRV from the NCI. But I doubt they will really have any interest in CFS.
  8. Marylib

    Marylib Senior Member

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    very interesting....

    Food for thought in all this. Thanks for all that Mark. Fascinating to a lay-person like me with a sidelines interest in science.
    I tend to agree...they will not be interested in CFS, but perhaps we will catch an updraft.
  9. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Mark

    Mark, have you converted?

    Tina
  10. caledonia

    caledonia

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    Mark - I like how you think. This the kind of stuff I think about when I am laying in bed waiting to fall asleep. I seem to get all of my best ideas then. I bet autism will be a big chunk of that 2%.
  11. hvs

    hvs Senior Member

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    Hilarious. If these people were students in my class I'd hand them their paper back and say, "try again."

    You just wrote a paper arguing that the absence of evidence proves that there is no evidence?

    Are you kidding me?

    Then there is an equal amount of evidence that proves to an equal extent (that is, not at all) that there is a spreading epidemic.

    [Can you imagine how big and a long of a study it would take to get a handle on the rate of spread of xmrv?]
  12. George

    George Guest

    Who's keeping the statistics???????

    We all know instinctively that there is an epidemic. But who's keeping the numbers?:confused:

    The CDC has been following this since 1984 yet there are no numbers available for number of cases reported. No stat charts to track this illness.:confused:

    Doctors have to report statistics at to the National Center for Health Statistics, Hospitals have to report statistics to them as well yet there are no numbers available.:confused:

    The CAA functions like the Autism Association. The Autism Association has numbers for there illness why doesn't some group like the CAA have the data for us?????:confused:

    Why can I not find ANY data, even estimates anywhere????:confused:

    Anybody know the answer to those questions?:confused:

    By the way Mark Awesome post!
  13. Cort

    Cort Phoenix Rising Founder

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    I don't think anybody's keeping track. Basically the government doesn't care about any CFS. We can't even get tracking information on SS applications. Nor can we get anyone to track the rate of CFS as young people come down with the HINI flu. Both the CAA and IACFS/ME have tried; it wouldn't be that hard - they're keeping data on these patients - but the feds are not interested.

    If the feds that this was an important disease maybe they'd lasso a bunch of hospitals into a tracking effort; for now all we have are population studies from regional locations.
  14. Cort's totally right - there are no numbers kept by anyone.

    This is how we get things like 1 to 4 million Americans with XMRV...

    I've never met a neighbour, or a friend, or anyone with my illness disability or symptoms.

    If it was common, I should do. You'd bump into people in hospitals, doctors practice etc.

    I'm always told it's incredible rare, the CDC say it's common.

    Guesswork!
  15. Advocate

    Advocate Senior Member

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    I appreciate the way you have spelled this out for us. I've never seen it all in one place before.
  16. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Well

    Well, the Witchita study and the one in Georgia was designed to find out how many people, percentage of population, have it. But when they can't define it or they make up their own definition, then what good is it?

    While I think their definition reflects a bias. I also think the nature of the illness makes it hard for anyone to make a definition. I guess the Canadians have done the best job of it.

    But symptoms and test abnormalities change over time. It doesn't mean the person doesn't have the illness, just moved into another stage, or to less sick than more sick. But they are still sick. And the high number of symptoms, I saw 67 once in an Australian document?.....

    I think they could use some biological tests to define it now, although ten years ago, maybe not. Number one, eliminate cancer, lupus, RA, MS and Mono.

    Then, see if the person has 3 of the following abnormal biological tests:
    low cortisol and peaking in the evening instead of the morning
    signs of inflamation
    high cytokeines
    low natural killer cells
    reactivated viruses such as EB, human parvo, HHV-6, cytomegalovirus, gut viruses
    MRI with white spots when seen with high resolution machine
    low growth hormone

    I understand that 10 years ago, it would have been hard to define. But I see no excuse for biological abnormalities to not be part of the definition today.

    We just have to accept that there is bias, a complex disease with abnormalities in things not often tested, and entrenched paradigms working against us.

    But there were attempts to count. They were just very flawed attempts.

    Tina
  17. zoe.a.m.

    zoe.a.m. Senior Member

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    Tina,

    It's quite true that it's been impossible to keep any kind of relevant statistics when there is no definition accepted across the board.

    I also agree that, at this point, it's bias and laziness or just that nasty kind of ignorance that prevents doctors from realizing and stating that the biological abnormalities exist and can be found and followed. Now, given it's not easy for most docs to run these tests, I can see why they aren't given to everyone--but--that needs to change based on how a patient presents and their level of disability!

    I find it more ridiculous each day that simply because it's tough for a doc to justify the testing, or because they don't think of cfs as serious, that these indicators are not being used. It's ludicrous for the medical community to act as though CFS is still shrouded in mystery and is "a contraversial diagnosis" (I was just told this by a young doc two weeks ago!) simply because a single normal CBC marker or swab test will not give a yes or no. CFS is not the only illness that requires further diagnostics! These types of tests are routine for people being investigated for autoimmune disease and cancers.

    I think your notion that any 3 of a number of markers being positive is an excellent idea.
  18. Mark

    Mark Acting CEO

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    I find that I keep coming back to the figures from the WPI, particularly the 95%, and thinking about what that implies. One of the conclusions that seems obvious to me from this extremely high percentage is that the people who meet the definition of CFS are only a subset of the people with XAND.

    The various definitions of CFS (and GWS and everything else) are ALL strikingly similar definitions whose only real basis seems to be the history and biases of the people who produced those definitions. It would be an extraordinary achievement, and a stroke of luck to boot, if it were to turn out that the very best definitions of CFS based on the symptomology, and the requirement to match 3 or more (but not 2) of the criteria, are actually a precise definition of XAND. Far more likely that the definitions that were used by the WPI are so strict that 95% of those people have XMRV, whereas if you remove a symptom or two the figure will drop somewhat but will include many XAND people who the WPI would have excluded.

    Since some PWCs have 10 of those symptoms , some have 5, some have 3, isn't it also likely that some people wih XAND can have 2, 1 or even none from that list?

    I really think that if you buy into the WPI results - and I do - then you should be re-evaluating everything in that context, especially the history of all these different conditions and definitions. Where this is highlighted most strongly is when people assume that all those people who fit the CDC's criteria but are not PWCs in our eyes, do not have XMRV. What appears to lie behind that assumption is that these other people really do have a psychiatric illness, or are malingering, or are imagining themselves into fatigue. If we allow ourselves to make that assumption, we are as guilty as our society was when it did the same thing to us. Surely these are, at the least, people who believe they have a physical illness with chronic fatigue, with a cause unknown to medical science. They may not be sick enough for all of us to identify with them, but surely you could draw that line anywhere. The 95% says to me that this line was drawn very strictly, and we really have no idea how far that line will have to be relaxed when the studies report. I do realise that the more dubious definitions of CFS appear to be cynically designed to muddy the waters by bringing in people who are simply depressed, for example. But even so, I see no reason to believe that there won't be a significant proportion of even the CDC-defined patients who will turn out to have XAND.

    Sorry, I seem to just be repeating myself now! Here's yet another restatement of the same point: I've seen it said that the various follow-up studies should all use the same definition of CFS in order to compare like with like. Whereas I would say that there's enormous value in conducting a variety of studies using different definitions so that we can get a much better picture of exactly who's affected and which definitions are the most accurate.

    So all those battles over the right definition for a diagnosis of CFS are now really a thing of the past. Unless every follow-up study is nobbled and none of them find any XMRV, all that will matter then for a diagnosis of XAND is whether the XMRV test is positive. As an academic exercise, testing will help determine which of the definitions of CFS was the most accurate. But if I'm right, and XAND includes most GWS, much IBS, much autism, some MS, etc, then the answer will be that none of the definitions were even close.
  19. gracenote

    gracenote All shall be well . . .

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    a variety of studies

    Thanks, Mark. I like your conclusions and I, too, would like to see this happen.
  20. usedtobeperkytina

    usedtobeperkytina Senior Member

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    yes

    Yes, and although some people have mild fatigue, I would not declare them to not have CFS.

    I had gradual onset then a sudden plummet. During the time of my gradual onset, three years, from time to time I would feel fatigued. On the weekend, I would be too fatigued (tired at the time) to walk the dog. So I just did light housework. I figured I worked too hard during the week. But then I would go to church on Sunday, but I couldn't stay awake for the two hours. So I went to the car and took a 15 minute nap. I figured I stayed up too late the night before. I figured I stayed up late because I liked to get things accomplished. I was just a night owl. I didn't know my sympathetic system was in overdrive, not allowing me to go to sleep. I rarely tried to go to sleep earlier, I had things I needed to do and I felt like doing them at night.

    Gradually, I got to where every day that I went out, I would feel fatigue so strong about 4 p.m. that it was like I had the flu. It was dangerous for me to drive. Cognitive problems crept in. Hot flashes not just during my period, etc. Then I plummeted.

    The point is... when someone says to me that they feel real tired often, I don't tell them, "Well, unless you can't leave the house, you don't have this."

    I say, "If the fatigue is regularly interfering with regular activities, then you need to go to the doctor or you need to start finding out through your own research what may be wrong."

    CFS or XAND / CFS can be mild, moderate or severe. Most of us on these discussion forums have it severe. The mild are still doing things, but they have to take regular rest periods healthy people don't have to.

    Tina

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