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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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*15th July* Dr Lucinda Bateman & Vincent Racaniello - Webinar!

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by VillageLife, Jul 14, 2010.

  1. VillageLife

    VillageLife Senior Member

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    Thanks George, Karen and Otis.:thumbsup:
  2. Lynn

    Lynn Senior Member

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    George said:
    Hi George, do you think that IRIS is the cause of the problems that many of us are having with LDN?

    Lynn
  3. Otis

    Otis Señor Mumbler

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    George,

    So to be sure I got the hypothesis. You have a high "EBV viral load" as detected by the EBV tiers, but they're not specific to distinguish "pure EBV" from the XMRV/EBV/MLV combo platter of proteins. On the flip side your immune response, as measured by the antibody test, is very low because apparently the immune is much more "specific" in it's response and doesn't recognize the XMRV/EBV/MLV protiens as a threat (that it recognizes).

    Did I get that right?

    No wonder we're so dang sick. Our immune system (even with the simplifying assumption it's not messed up by the viruses) is tuned to respond with antibodies to VERY specific virus signatures (much better than the tests for the viruses) and meanwhile we're getting slammed by these virus combinations (to which we can't mount a meaningful immune response) in ways no one can really understand right now.

    Wow.

    So then, if we tamp down enough of the viruses via meds our immune system can mount a meaningful response against what's left because it can "see " what to attack again.

    So to extend this to realistic treatment it seems (worst case anyway) we will need highly individualized testing to nail down the target viruses so they can put together a tailored anti-viral combo which will may need to deal with multiple virus families (retro, herpes, etc.). Well, I guess this may (eventually) be a good career move for infectious disease docs who want to roll up their sleeves and get into a new world which, right now anyway, is looking really complicated.

    Looks like we need lots more research money than I had envisioned.
  4. CBS

    CBS Senior Member

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    In effect, this is what the "in process" Stanford Study is looking at, a large combination of possible infectious agents.
  5. glenp

    glenp "and this too shall pass"

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    Big Huggies for George

    I am swimming underwater!!! Your explaining this makes it much easier George -- TY so much

    Big, big, huggies for George, that handsome beast.


    glen
  6. George

    George waitin' fer rabbits

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    Hey Lynn, I don't know I haven't wandered down that road to research it. I've been concentrated on the whole XMRV thing. But it sounds like a reasonable hypothosis.

    That's the way it seems to read in the SFFV/MLV mouse models. Which ends up killing the mouse of course. (AAAAKKK) but yeah, our bodies are trying to fight something that it can't see correctly. All antibodies are specific for particular viral papers that's how they can test for titers for EBV, HHV-6, Parvo B-19 and see if you have them. The test show 4 diffrent antibody responses. Capsid - or protiens produced by the envelope of the virus, early antigen, and the EBV nuclear antigen (EBNA), and immunoglobulin G and M subclasses to the viral capsid antigen. Most of use will have really high titers in the Antigen and nuclear antigen, protiens made by active EBV but if the virus itself shows up as a goose egg, (it becomes invisible because it stuck like a limpet to the XMRV) then your doctor is not going to treat you with antivirals. Not unless your vet. . . I mean doc is way smarter than mine. (grins)

    So yeah, when the dust settels I think doctors will have to run a complete panel of possible pathogens on Long Term Patients to find out how many each person has and provide at least some basic antiviral treatment . For newbies or those under say 5 years they will probably just provide Ampligen to up the NK function and some anti-retroviral meds to stop the XMRV from attaching other viruses and hiding them.

    Course the entire line of inquirey could end up to be a dead end. But my money's on Sandra Ruscetti being right.
  7. Otis

    Otis Señor Mumbler

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    And it also sounds like biomarkers, biomarkers, biomarkers (from the webinar) - plus co-infections, co-infections, co-infections (from George) - to fit the pieces together in the messy real world no matter how tightly we control a cohort. And then to tailor a proper treatment. One size fits all isn't going to get us there if I'm reading all of this correctly.

    But I want to be well now. (sigh)

    I was hoping for more of a hint on where Bateman/Singh are. I think the Dr. Alter scenario will drive pre-publication data to only be shared in verbal form - at least in many cases. Well, we were "in the know" for a couple of weeks out of this long haul. :) But it may have been a very pivotal couple of weeks in the grand scheme.

    Perhaps the hint is that yes, XMRV is a player, but subgroups are very real and (hopefully) Dr. Bateman's rigorous tracking will tell us more about how it fits in with what we already know.
  8. George

    George waitin' fer rabbits

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    Seal Envy

    CBS I have serious seal envy. I want a copy of that for my signature.

    I think you're right the time has come to demand the CCC as the primary diagnostic criteria for CFS/MEers everywhere!

    Now if I can just. . . figure. . . out . . .
  9. George

    George waitin' fer rabbits

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    Brilliant

    The DHHS has a really brilliant strategy, I think, they withhold all of the publications for as long as they can and there are dozens of them. That buys them as much time as they can milk. Unfortunately the CFS patient group is pretty unforgiving on the time issue. (grins) THEN they let all the papers publish one right after another, an avalanche as it were. This actually buys them more time because the patients, patient advocacy groups, media and general public will have to wade through the subsequent mess! By the time the dust settles figure three to six months they are set up to deal with the problems.

    Still I think treating this will be quicker than for any other retrovirus. Anti-virals, antiretrovirals, NK boosters like Ampligen (which will finally have a disease, grins) androgen reduction and good support supplements like Co-Q10 and magnesium all of these are available now without having to jump through hoops and get approval. (with the exception of Ampligen) Three years to the clinic is my Kresken prediction. (snort, arf, woof)
  10. ixchelkali

    ixchelkali Senior Member

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    That's similar to what Dr Coffin said at the CFS Advisory Committee meeting last October. That the low replication rate should make it easier to develop a vaccine but harder to find an antiretroviral that works against it.

    It can be hard to be both hopeful and patient. I think it's going to take quite a while -- certainly longer than we'd like -- to do the research necessary to establish disease causation, and for treatments to become available. But at least now, research is moving forward. At least now, there's hope. We'll have to find the balance between hope and unrealistic expectations. But fortunately, we ME/CFS patients have lots of practice seeking balance in our lives.
  11. HowToEscape?

    HowToEscape? Senior Member

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    Is a recording available online?
  12. Otis

    Otis Señor Mumbler

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    George,

    Thanks for the translating Sandra Ruscetti's work for us. It just went whipping past me at the speed of light. That pair have more brains in one household than most city blocks combined.

    And bonus points (er, bones) for clarifying the different antibody tests, I was going to spend some time trying to research them.

    I can't get my doc to even TEST for viruses, so I think I'll try a vet. ;)

    I'm beginning to think I can begin to get across why it's important to know what I have and then I can get on to trying to find somebody to knock at least one of those suckers back to buy me some time.

    One more light bulb moment (well they're just really low-watt fluorescents). When I first got sick in '80 my doc was sure I had EBV but all the tests came back negative. Recent XMRV news had me convinced that XMRV was it - EBV was optional. Not sure what tests were available or what he ran back then but I see now how even just EBV tests could have gotten false negatives with XMRV and/or other viruses in the mix. And throw in mold due to a malfunctioning furnace humidifier. Can't imagine the complex situation 30 years has added to the stew.

    Otis
  13. ixchelkali

    ixchelkali Senior Member

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    Thanks, George!

    Thank you for your explanation/theory, George. And thanks to the rest who shared their comments on the webinar.

    :thumbsup:
  14. George

    George waitin' fer rabbits

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    Will be in a couple of days.

    Otis - man I'm feeling for ya, that angle of bent looks really painful! Hang in there not too much longer and it won't be a bunch of theories but hard copy you can print out on the printer and rain down on your vet. . .I mean doc's head. Mines not much better he sites the negative capsid on the EBV readings as meaning that the test is negative even though the titers for antigents come back in the 3800 to 5700 range. Since those numbers are so out of the stratosphere he takes that to mean it the whole thing is just one big anomaly.

    (human note) My vet treats my dog better !

    I really like my new signature!
  15. Otis

    Otis Señor Mumbler

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    It usually takes a few days. jspotila usually posts a new thread when it's available. I just watched the last one. It was maddening because the slides and audio were out of sync.
  16. Otis

    Otis Señor Mumbler

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    That makes sense - not that I like it. Not that elections are ever considered (ahem) but it also moves the timeframe when people are making sense of the results well past November. If it ever comes up - "What about XMRV?" can be brushed off with "There are no definite conclusions and top scientists are looking at it all closely." Well, I'll be happy to have all that data to chew on.


    Love the new signature. :victory:
  17. Frickly

    Frickly Senior Member

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    Thanks George, for explaining your theory. Very interesting. Now the waiting game continues.........are we there yet?
  18. George

    George waitin' fer rabbits

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    FRICKLY!!!!! George love Frickly, slurp lick, slurp
  19. jspotila

    jspotila Senior Member

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    Sorry about that, Otis. There was a technical problem with the recording that caused the out of sync-ness. The problem appears to have been fixed, and the recording of today's webinar will be available in a couple days. It was such a bummer that Dr. Bateman got cut off and couldn't get out of mute. The plan is to incorporate some of the questions she would have addressed into another form on the website.
  20. Forbin

    Forbin Forbin

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    I don't think this date is correct. In 1977 Japanese researchers first identified the disease ATL (Adult T-Cell Leukemia) in a cluster of patients. In 1979, American researchers first isolated and identified the virus HTLV-1. In December 1980, Robert Gallo, et al., published the first paper linking HTLV-1 with T-cell lymphoma. Frank Ruscetti was a co-author(see link below).

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC350514/pdf/pnas00499-0477.pdf

    [By the way, that paper was published in that "dubious" publication "The Proceedings of the National Academy of Sciences (PNAS) :Retro smile:]

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