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Dr. Cheney comments on a you-tube video about his poster at the XMRV Workshop

Discussion in 'XMRV Research and Replication Studies' started by richvank, Sep 19, 2010.

  1. richvank

    richvank Senior Member

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    Hi, all.

    Dr. Paul Cheney has given me permission to post his comments about a you-tube video that was made about his poster presentation at the recent XMRV Workshop at the U.S. NIH earlier this month. It's O.K. to repost these comments, so long as they are attributed to Dr. Cheney.

    Best regards,

    Rich


    "A poster presentation by me made at the 1st International XMRV meetings held at the NIH in early September, 2010 was partially summarized by a U-tube video (see
    http://www.youtube.com/watch?v=gkgEQI3l9uY&feature=player_embedded). While the video was in many respects very well done and brings needed attention to CFS and its link to XMRV, there are several errors and misrepresentations made about the poster and what it actually said or implied.

    "My biggest problem with this U-tube video was the emphasis on "heart failure" as opposed to heart dysfunction or "LV diastolic dysfunction" which predisposes to orthostatic intolerance rather than death by heart failure which is very rare in my select cohort. My poster never said heart failure was associated with CFS. However, we do know that broadly defined diastolic heart failure does not typically occur until age 72 or later so what will happen to my patients when they get into their 70's is up in the air, assuming they are not treated with things like CSF's before then. There is also the semantic question of how heart failure is defined. If it is defined by organ failure and usually death within 5 years, I don't see this and is likely very rare in the age brackets I see with CFS with an average age of 49. If it is defined by organ dysfunction including heart, GI tract, exercise intolerance, heat intolerance and brain problems etc. produced by low cardiac output then you could use the term heart failure due to diastolic dysfunction in much of my practice. Death by such a functional definition is, however, rare compared to the heart failure patients admitted to hospitals with normal ejections fractions and deemed diastolic heart failure. Such a diagnosis is very lethal over the next five years with only a third alive after five years and virtually all are quite disabled and will remain so.

    "Another problem is the "8 of 16 family members" positive for XMRV. The poster actually says 50% of healthy family controls or exposure controls (N=8) were positive. The U-tube video assumed that there were 8 positives when in fact 8 were tested and 4 were positive. 6 of 8 were healthy family members of CFS cases and 2 of 8 were CFS exposure controls and not family members. However, when we get the serology data back, I think the number of family members infected will be higher than 50% and the N value will climb well beyond 16 so this correction may soon be mute.

    "I think the U-tube video misses the very important point that the cancer rate is much higher (47%) in the non-CFS, first order family members than in the CFS cases themselves. This will be the big story going forward as to how you answer the question of why this is so. Is CFS a compensatory response to reduce serious disease and early death? I will say that Dr. Jason's assertion (or perhaps it is only the U-tube's assertion) that death occurs 25 years before they should have died is a fallacy as that number is drawn from the average age of all those who actually "died" and not a large group of CFS cases. In addition, perhaps a third of deaths occur by suicide in the young CFS cases and that will skew that number of 25 years before their time.

    "The U-tube's final assertion that XMRV is a killer is somewhat exaggerated, at least in CFS. It certainly can be a killer but the U-tube video paints the death rate as much higher than it really is in CFS. In their defense, XMRV is a killer but more-so in the non-CFS but infected cohort which I think will be much larger than CFS itself and drives many cancers to be very aggressive with much higher death rates than would otherwise occur (see Singh et al, PNAS, 2009). XMRV may also be driving the epidemic of diastolic heart failure now seen in those over 70 and most die quickly within five years once admitted to hospitals for heart failure (see Owan et al, NEJM, 2006). XMRV may well be a killer, but the paradox is that not as much a killer in CFS unless perhaps they reach age 72 or above but that is near our present human life expectancy. The most interesting question of all is how did they live that long with such a killer virus and with such severe disability comparable to heart failure?"

    Paul Cheney, M.D.
     
  2. Sing

    Sing Senior Member

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    Cancer rates and CFS

    Dr. Cheney says, "I think the U-tube video misses the very important point that the cancer rate is much higher (47%) in the non-CFS, first order family members than in the CFS cases themselves. This will be the big story going forward as to how you answer the question of why this is so...."

    I have noticed that the people around me who have cancer or who have died of it were all people who had a lot more vitality and energy than I do, with ME-CFS. So much so that my little joke to myself is that I don't have enough energy to get cancer. There is nothing strong or intense or vital about my system. However, when someone who has this vitality gets cancer, the cancer seems to be very aggressive too.

    I recognize that the above statements are not scientifically based or rational by most people's standards. But now here is a finding by Dr. Cheney that the healthy family members (who possibly have XMRV but not CFS) are getting cancer at a much higher rate than the CFS patients.

    What do you think?
     
  3. Otis

    Otis Señor Mumbler

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    I'm sorry to hear the Sing, but it appears to support Cheney's (limited) data.

    Because I'm out of my depth here all I can do is ask questions. So is the hypothesis that HGRVs can have different disease end-points amongst a familial group?
    - One is CFS, which may be an adaptive state to avoid cancer. This is interesting in that at some level we "know" we are in danger for getting cancer and somehow adapt - the result of which is CFS.
    - The other primary(?) outcome is the development of cancers. I wish we get a vote, I might rather burn out than fade away.
    - I believe, according to Dr. Peterson anyway, cancers are still more prevalent in CFS than the general population. All of the above really sucks in this case.

    Even in the simplifying case of "one" retrovirus, say XMRV (vs. the families of HGRVs that appear to be reality) I couldn't find/understand via some searching if retroviral insertion would be deterministic and lead (in this case) solely to CFS or if it could support the variations in disease-states above.

    I would appreciate comments from someone more knowledgeable on all that rambling.

    My limited googling (or more to the point my limited understanding of what I found) of what I found Do retroviruses have predictable
     
  4. Stone

    Stone Senior Member

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    I tried to check out the video on YouTube and it said it had been removed by the user. Has anyone else gotten this message or am I doing something wrong?
     
  5. Otis

    Otis Señor Mumbler

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    I'm getting the same message. I as getting something like 'private video' but now it appears to be completly gone.
     
  6. Kati

    Kati Patient in training

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    Perhaps the owner of the video decided to take it off circulation since the wrong information was being passed around. The right thing to do.
     
  7. jonc

    jonc

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    I can't claim to be very knowledgeable, but I believe that is exactly what Cheney is postulating - that CFS is (at least partially) an adaptive response to an infection. Those who have XMRV/HGRV/whatever but don't have CFS are more likely to develop cancer than those with CFS, whose immune systems are engaged in a fight with the virus that, perhaps, reduces the risk of cancer but leads to all the other symptoms that we have to live with.

    Note that this doesn't imply that those with CFS have a lower risk of cancer than the general (uninfected) population - just lower than the XRMV/HGRV+ non-CFS population.

    It seems like there's a lot more data that needs to be gathered before this proposition is proved though.
     
  8. richvank

    richvank Senior Member

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  9. Sasha

    Sasha Fine, thank you

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  10. leela

    leela Slow But Hopeful

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    A bit off-topic here(sorry), but I am wondering what is the test for the LV diastolic malfunction? Does only Cheney do it or is it a standard test any doctor could do?
     
  11. Sing

    Sing Senior Member

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    Richvank?

    I want to know too, Leela. Richvank?
     
  12. glenp

    glenp "and this too shall pass"

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    anyone tested?

    Has anyone managed to get the cardio echogram while standing up?

    Anyone had Bio-Z test?

    glen
     
  13. gregf

    gregf Senior Member

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    Crikey. Here's an idea.

    Students of Cheney will know that ME puts our body in to a low oxygen state to protect us from the effects of mitochondrial dysfunction. Specifically the cells "cooling system" is failing to reduce super oxides to H₂O. As Cheney says "the fatigue is saving their lives"

    Now this survey of his patients shows that while patients with ME have a higher chance of succumbing to cancer than the general population, family members who do not have ME yet have XMRV, have an even higher chance of cancer or autoimmune diseases.

    This is implying to me that yet again the ME is the body's defense mechanism, this time against cancer.

    Allow me to add a fourth category to the discussion, people who have had ME but are "recovered". Let's define that as an increased Karnofsky score to >80. Are they the same rate of cancer risk as an ME patient, or are they at the same higher risk as the family members who are positive for XMRV ? The latter makes sense because "recovered" and "did not gets" are both apparently healthy but XMRV+.

    In that case, is it wise to attempt to make a full recovery as once again the ME may be part of the bodies defense, this time against cancer, and saving our lives.

    Fascinating stuff.
     
  14. ukxmrv

    ukxmrv Senior Member

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    It certainly is Greg,

    My family has early deaths due to cancer. My Grandmother and GGM both died very young. Other family members have ME or CFS depending on which criteria is used. A relative through marriage now has ME.

    My sister and I have both had repeated pre-cancerous cervical problems. Mine predated the ME. My sisters health is more variable. My own husband has now had an early brush with cancer.

    I'm hoping that XMRV will have some answers for my family. Dr Cheney is one of the non-WPI experts that I listen to and appreciate.

    XMRV+
     
  15. richvank

    richvank Senior Member

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    Hi, leela.

    Dr. Cheney uses a state-of-the-art echocardiograph machine. The main parameter he evaluates to determine the degree of diastolic dysfunction is the IVRT (isovolumetric relaxation time). This is the time interval between the closing of the aortic valve and the opening of the mitral valve. That is a measure of how rapidly the heart muscle is able to relax the left ventricle. In diastolic dysfunction, this relaxation is slower, so IVRT is larger. Dr. Cheney says that a normal value is about 75 milliseconds, but for people with CFS it is around 100 or so.

    I think it would have to be done by a cardiologist who has a newer machine and is up-to-speed on diastolic dysfunction. Apparently the significance of this has been recognized in the cardiology community only in the past few years, and very few of them know that it is associated with ME/CFS.

    Best regards,

    Rich
     
  16. xrayspex

    xrayspex Senior Member

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    Greg I wondr those same things too and think thats why I had bad reaction to stimulants, ssris snris, provigil and hormones.....stuff that tries to increase my energy makes me feel worse although for a brief period some made me feel a bit better, I wonder that Rich with the methylation block protocol too, am xmrv+ and appear to have an upreg immune system don't get colds etc much anymore
     
  17. leela

    leela Slow But Hopeful

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    Thanks, Rich, precisely the info I was looking for.

    Going a wee bit off-topic again, but as a person who is intrigued by Cheney's approach, and by his openness and courage in continually
    morphing his strategies as his understanding of ME/CFS develops, I am at the same time frustrated and perplexed by the (to me)
    exorbitant fee required to receive his full newsletter.
    Would any of you who are his patients know if he would be amenable to a "group" subscription, wherein a big wad of us could contribute small amounts to cover the fee and then all have access to the info there? Even $50 a year would be a lot for me for a newsletter subscription--but $500? Not even in the ballpark. Surely he is aware that the majority of us have zero income at this point, combined with a ravenous appetite for up-to-date information.
     
  18. xrayspex

    xrayspex Senior Member

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    Leela couldnt one person collect the money, pay it and set up the account and then just give all the members the password and name to get in?
     
  19. SOC

    SOC

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    If I'm following you, the idea is that HGRVs are likely to cause cancers, but that those of us with ME/CFS may have a genetic "benefit" that helps our bodies avoid (or reduce) the cancers by our adaptive response to the infection that others don't have. Unfortunately, this adaptive response is also debilitating.

    It's a neat idea. Instead of being the genetically feeble ones, we may be the genetically stronger ones. :D

    Maybe someday researchers will be begging to study us to find out how our bodies manage to fight the cancer-causing viruses. Wouldn't that be ironic after all these years of neglect. :tear:
     
  20. SOC

    SOC

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    Without Dr Cheney's agreement, I imagine that would be dishonest. But maybe I don't understand the arrangement. :confused:
     

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