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Dr. Byron Hyde's Comments on XMRV

Discussion in 'XMRV Testing, Treatment and Transmission' started by leela, Sep 25, 2010.

  1. leela

    leela Slow But Hopeful

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    Okay, I want to start out by saying my intention is NOT for this thread to be about Hyde-bashing. I have great respect for the man, who has done so much to redefine this illlness, and even written his compassion into that definition in a beautiful way.

    My question is about this quote I read of his, date unknown, accuracy of quote unknown, regarding XMRV:
    'In four of the sixty M.E. epidemics an enterovirus was recovered. In over 50
    other [M.E.] epidemics, no virus was recovered but the average incubation
    period of the infection in these epidemics was 3-6 days, as it is in all
    enterovirus infections. However, the "incubation period of [the not
    enterovirus, but retrovirus] XMRV is up to 21 days which makes it impossible
    to cause an epidemic illness.'

    The question in particular that arises for me, (besides whence came the 21-day incubation,) is that if
    one group of people were all exposed at around the same time, and the incubation period is consistent (whatever that period is) how does that preclude epidemic outbreaks? As far as I can tell that would mean all susceptible people, that is to say people with whatever immune terrain and cofactors necessary to encourage the retrovirus to incubate, would all come down with it at approximately the same time, 21 days or what have you later---would they not?

    How is a six-day incubation an epidemic when a 21-day one is not? Logically it seems it is still an epidemic, it just shows up in the population after a longer delay.

    I have no attachment one way or another what factor this retrovirus plays in our illness. Clearly it has a role. I am just curious about the logic here. I am not knowledgeable in this area.

    From Merriam Webster, defining it as an adjective:
    1epidemic adj \ˌe-pə-ˈde-mik\
    Definition of EPIDEMIC

    1
    : affecting or tending to affect a disproportionately large number of individuals within a population, community, or region at the same time <typhoid was epidemic>

    As a noun:
    : an outbreak or product of sudden rapid spread, growth, or development <an epidemic of bankruptcies>

    Perhaps in medical world, something is only considered an epidemic when it is rapid?
    Is there a term for outbreaks in disproportionately large number of individuals within a population, community, or region at the same time after a longer delay? Typhoid, by the way, (the example used by M-W to define epidemic) has an incubation period of ten to twenty days according to one source.
     
  2. leela

    leela Slow But Hopeful

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    Here I'm adding a bunch of definitions from Medical dictionaries. There does seem to be a gap between the definitions hinging on either a large number of affected people, or the rapidity of the spread. Perhaps some people associate contagiousness with epidemics, that is to say a pathogen that transfers rapidly and easily to large groups of people. Others perhaps view an epidemic as a pathogen that affects an unexpectedly large group of people over time.

    HIV is considered "pandemic" and the incubation period can take years from the time of infection, depending on the person's ability to create antibodies.

    I am starting to get confused here.


    epidemic (p-dmk) or epidemical (--kl)
    adj.
    Spreading rapidly and extensively by infection and affecting many individuals in an area or population at the same time, as of a disease or illness.
    n.
    An outbreak or unusually high occurrence of a disease or illness in a population or area.
    The American Heritage Medical Dictionary Copyright 2007, 2004 by Houghton Mifflin Company. Published by Houghton Mifflin Company. All rights reserved.

    Epidemic
    A situation where a large number of infections by a particular agent, such as a virus, develops in a short time. The agent is rapidly transmitted to many individuals.
    Mentioned in: Hepatitis A, Influenza, Plague, Relapsing Fever, Smallpox, Typhus
    Gale Encyclopedia of Medicine. Copyright 2008 The Gale Group, Inc. All rights reserved.

    epidemic
    [-dem′ik]
    Etymology: Gk, epi + demos, people
    1 adj, affecting a significantly large number of people at the same time.
    2 n, a disease that spreads rapidly through a demographic segment of the human population, such as everyone in a given geographic area, a military base, or similar population unit, or everyone of a certain age or sex, such as the children or women of a region.
    3 n, a disease or event whose incidence is beyond what is expected. Compare endemic, epizootic, pandemic.
    Mosby's Medical Dictionary, 8th edition. 2009, Elsevier.

    epidemic,
    n disease outbreak that affects more individuals than expected in a population.
    Jonas: Mosby's Dictionary of Complementary and Alternative Medicine. (c) 2005, Elsevier.

    epidemic,
    adj spreading rapidly and widely among many individuals in a single location or region; illnesses labeled epidemic are those that occur beyond normal expectations and are usually traceable to a single source.
    Mosby's Dental Dictionary, 2nd edition. 2008 Elsevier, Inc. All rights reserved.
     
  3. julius

    julius Watchoo lookin' at?

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    Just a comment. I saw that interview. It was not too long after the Science paper. It was during a conference that he and Dr. De Merlier both attended. DeMerlier also did an interview with the same program.

    In his interview De Merlier had pretty much the same to say about XMRV. That he was quite sure it was NOT a major factor for CFS. Now, Dr De Merlier is one of the few who have actually found the virus, and is going to be a HUGE help for us in this regard.

    I can't say that Dr Hyde has also changed his mind, but before anyone gets all fired up....remember this was early on, and things were less clear back then. It would be good to hear what his thoughts are on it now. Has anyone heard anything.
     
  4. Andrew

    Andrew Senior Member

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    1. At the time, Judy Mikovits pointed out that they didn't know the incubation time.

    2. A 21 day incubation time doesn't rule out XMRV. People can be asymptomatic. It could infect a community and it doesn't attract attention until something activates it in large numbers.

    3. WPI has never taken the official position that XMRV causes CFS. We don't even know that it causes any illness yet. But because the pattern of our illness fits a retroviral pattern, it seems like a good candidate.

    4. I'm not convinced that XMRV or a group of similar retroviruses cause CFS. The proof is not there yet. But I'm willing to support WPI. They are not only studying XMRV. They are looking at other correlations too.
     
  5. leela

    leela Slow But Hopeful

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    I want to reiterate what I said in my first post, that I have huge respect and admiration for Dr Hyde. I'm just trying to figure out his point here.
    Nor am I convinced either about anything regarding the connection between XMRV and ME/CFS. (Does seem likely, though, especially with the herpes-family inter-relationship data.)

    In this thread though, I am curious about the argument Dr Hyde used against a connection, because, connected or not,
    it doesn't seem from examples of other epidemic or pandemic viruses, that a long incubation time rules out epidemic status.
    In fact it doesn't seem to make logical sense, since whatever the incubation time, all exposed and predisposed individuals
    will show effects of viral infection at the same time based on the time of their exposure. The "outbreak" will appear a certain amount of time after exposure.

    As I muse further, perhaps his meaning was that, much like people can have HIV for years before or if ever contracting AIDS, there is a difference between being infected with a virus, and developing a disease from it. Thus the "epidemic" portion would be the illness, not the virus. Thus, outbreaks like Lyndonville or Incline Village would have been from an altogether different trigger, whether or not any or all of those people already had been exposed to XMRV.

    I really would like to hear more from him as more info comes out on X/P/H etc, as I think he is among the vanguard who have put a lot of time, energy and thought into ME/CFS.
     
  6. Hip

    Hip Senior Member

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    First of all, there is no logical reason why a contagious agent with an incubation period of 21 days (or longer, for that matter) cannot cause an epidemic. An epidemic occurs simply when each person infected goes on to infect, on average, more than one new person. Then you get a growing epidemic. The average number of new people that get infected from one given infected person is called the basic reproduction number of a virus or microbe, often denoted by R0. If R0 is > 1, then you get an epidemic. The incubation period, however, has little bearing on the R0 value.

    It is possible that Dr. Byron Hyde may have been misquoted slightly: if you amend the final sentence of his above statement to "However, the incubation period of XMRV is up to 21 days which makes it impossible to cause SUCH an epidemic illness", that is, add in the word "SUCH", then what he is saying would make much more sense. He would be saying something like "XMRV could not have been the virus transmitted in these last 50 CFS epidemics, as we know the average incubation period in these epidemics was 3-6 days".

    That would make his statement clear and logical.

    In other words, Dr. Byron Hyde may have tried to say that the 3-6 day incubation period noted in these 50+ CFS epidemics suggests that the transmitted virus was an enterovirus (3-6 days is a typical incubation period for enterovirus). Of course, it is also possible, and likely, that the people in these epidemics who caught an enterovirus, and then went on to develop full blown CFS, are those people who already had XMRV in their bodies (perhaps having acquired XMRV decades earlier, for example).

    In general, my bets are on this being the most likely scenario: XMRV on its own may not be enough to cause CFS; only when a person with XMRV goes on to catch some other nasty virus like enterovirus or HHV-6A, does CFS appear. I would also bet that enterovirus or HHV-6A, etc, may be able to cause CFS even without XMRV, in many cases.
     
  7. leela

    leela Slow But Hopeful

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    Thanks, Hip. I had a strong suspicion that the quote from Dr Hyde was either taken out of context and/or misquoted.
    I'm glad you have clarified several points:
    That a long incubation period does *not* preclude epidemic status in and of itself
    RO number, of which I was unaware
    That a 3-6 incubation period had been noted for previous outbreaks and a overarching association with enterovirus, of which I was also unaware
    That Dr Hyde's comment was likely based on the above

    I also tend toward the opinion that XMRV is one thug in a dreadful gang that plunders the ME/CFS patient's territory. Clearly we need to understand what makes us
    human petri dishes for the array of pathogens that plague sufferers in the first place. Causative or not, it can't be helpful to have a retrovirus lurking in the system,
    possibly working synergistically with the herpes-family viruses. No one likes a cranky, abusive driver OR passenger.
     
  8. blacksnake

    blacksnake

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    Epidemic

    I was at a talk by Dr Hyde 2 weeks ago in Melbourne. What Hip said was correct - the comments have been taken out of context.

    Here is what I understood from the presentation (all care taken but apologies if I misrepresent Dr Hyde in any way):- In the ME epidemics the infection trail (ie. who was coming in contact with who at what time) was fairly easy to understand. Buses of school children on sports trips coming in contact with other groups. Lots of people getting sick in just a couple of days. etc. The "easy to see" contagion trail is part of the evidence that a pathogen with short incubation time was involved. As he expressed: 3-6 days; therefore excluding others with longer incubation periods. (I assume he meant excluding others from being the primary and only cause).

    He expressed the point about "no epidemics with longer incubating pathogens". I didn't think this was literal or that he meant it that way. His point was that, with a longer time period events diffuse over time and the contagion may not be recognized. Lets say a single person infected a large number of people on a single day. When they become sick several weeks later they will not necessarily remember or connect the dots. With a 3-6 day period the events are "sudden" and dramatic if a large number if people get sick. Therefore with a longer time period it is probable that no one will make the connection.

    Following comments are my further interpretation: With a longer time period there is also a longer spread. eg. 3-6 days becomes 2-4 weeks (something like that). 3 days becomes 2 weeks. Imagine the group of people becoming sick between 2 and 4 weeks from infection time. Would they connect that they were all at place X some weeks ago and must have caught it at the same time? Over 2-4 weeks they might even assume they infected each other and totally miss the true infection point.

    Peter W.
     
  9. dannybex

    dannybex Senior Member

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    What Andrew said.

    Plus, some people may not be aware that Hyde's definition of M.E. is more narrow than most (including the CC definition). I believe he says that M.E. always has sudden onset, and is never gradual...
     
  10. leela

    leela Slow But Hopeful

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    Peter--
    Can you tell us other things he talked about? Was there something (or things) he said that struck you especially?
    It must be very helpful to have him speaking in Australia, as I understand the medical stance towards ME is even less friendly there than here in the US...
     
  11. Francelle

    Francelle Senior Member

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    Hi Leela,

    Am posting a link to the Australian Medical Practitioners management guidelines for M.E./CFS. http://sacfs.asn.au/download/guidelines.pdf

    I think on the surface of it our medico’s are no more accepting nor dismissive of the condition than anywhere else in the world except perhaps for the UK where there seems to be a concerted and systematic denial of its legitimate existance.
     
  12. Enid

    Enid Senior Member

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    Quite so - definite denial here !
     
  13. slayadragon

    slayadragon Senior Member

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    Cheney and Mikovits have talked about various factors that can activate a latent XMRV infection. The ones they have cited include cortisol, inflammation, androgens, estrogens, flu, Lyme infection, toxic mold, vaccines.

    Courgnaud et al talked about co-pathogens and environmental agents as being causal factors.

    Hyde's experience was with epidemics in which people experienced the weird severe symptoms described in Osler's Web - e.g. people not remembering the name of their own town, being unable to stand up, heart pain, etc etc etc. He describes this as "ME/CFS." He closely observed the Tahoe Flu epidemic in the mid 1980s, for instance.

    The less weird illness that grinds away at people seems related to this weird Incline Village/Tahoe Flu illness, but is not what Peterson called the CDC about.

    XMRV conceivably could be "in residence" for a long time, but not cause any problems until something activates it.

    That something could be - say - a vaccine that community members got. (There are rumors that teachers in Tahoe were required to get Hep B vaccines. I need to get confirmation on that.)

    It could be a virus that passed through the area.

    It seems less likely that toxic mold would have dropped huge numbers of people on the same day. Same thing with regard to Lyme infections, stress/cortisol or estrogens/androgens.

    Most reasonable explanation (in my mind): an "environmental agent" that appeared in the area and hit a bunch of people at once.

    An example of such an environmental agent (though one with a long incubation period itself): cryptoccocus gatti, a fungus that has been present on the west coast recently.

    Another example of an environmental agent would be if all those people decided to have a big party and swim in a lake that was full of cyanobacteria. (The CDC admits without question that cyanobacteria toxins can make people extremely sick or kill them, so this is not science fiction.)

    Some cyanobacteria produce spores that cause a flu-like illness when they're breathed in. If a lot of such spores (from a particularly bad cyanobacteria causing weird symptoms that - indeed - cyanobacteria are known to cause) were present in a certain place on a certain day, and everybody in that place breathed them in on that day.....they all could drop on that day.

    And perhaps once they dropped, XMRV would activate.

    All of this is scientifically plausible. Every scientist who knows anything about cyanobacteria that I've discussed it with has said emphatically that it is plausible.

    Is that what happened in the Incline Village epidemic?

    For whatever reason, the non-scientists I present the theory to all dismiss it as a fairy tale, even when i say that Erik observed something like this during the Tahoe epidemic in the 1980s (and over the years since then in Tahoe), and that I myself have experienced it there just recently.

    Maybe it's just too horrific to believe, I don't know.

    Or maybe they think that "someone" would have already figured out that it was present in the epidemics (even though all those "someones" were oblivious to the idea that toxic mold might be related to ME/CFS until just a couple of months ago).

    But it does fit the facts.

    Best, Lisa
     
  14. Enid

    Enid Senior Member

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    And those weird symptoms (Royal Free) appeared down here Kent UK (apart from the rest of the Country). We are a wide group with no physical contact. Think the notion epidemic is a convenience - but one could say ME is now of epidemic proportions.
     
  15. leela

    leela Slow But Hopeful

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    Lisa,

    I wasn't under the impression that in any of the outbreaks everyone got sick on the same day. That's the only part that sounds science-fictiony to me!

    I don't think it as all difficult to believe that any environmental agent(S) could trigger a major illness in susceptible people--it happens all the time! Whether it is an
    exogenous virus or bacterium, a mold spore bloom, a pesticide spray, a chemical spill--look at allergy season!! Half the people in Santa Fe become miserable
    (some near incapacitated) when the pion trees pollenate. If a bunch of people have an underlying pathogen or set of pathogens that is causing immune trouble,
    why the heck *wouldn't* an environmental stress trigger it?

    Could you explain what you mean by this? I'm not sure I understand.
     
  16. slayadragon

    slayadragon Senior Member

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    Below is a quote from Erik, describing his recollections of how the Tahoe Flu spread.

    Let's say that this "environmental agent" was present in one place - or a few places - in the Lake Tahoe area. Since cyanobacteria grow in water, this is reasonably plausible.

    Let's also say that the cyanobacteria is more present at certain times than others. Since cyanobacteria are known to "bloom" - meaning sometimes they're present to cause problems and other times basically disappear - that's plausible.

    And insofar as the cyanobacteria spores blow around in the wind (which they are known to do - think about how Red Tide works), then they could blow to hit a certain spot only when the wind direction and wind speed was just right. So that's also plausible.

    If that's the case, then people would need to go to a specific spot in the Lake Tahoe area to get hit with this stuff. And they also would need to be at that specific spot at a moment in time when the toxins were particularly bad.

    What you'd see then is scattered cases of people dropping at different times, with no particular apparent rhyme or reason to it.

    And then sometimes, in (say) a particular building, you'd see a bunch of people drop on the same day.

    What you WOULDN'T see is the illness passing from person to person in any systematic timeframe. For instance, a regular "flu" tends to be something that one person gets, and then that other people in contact with that person get three days later. According to Erik, that was not what happened during the epidemic.

    I myself had the "less weird" illness that nonetheless meets the definition for CCC ME/CFS. When I was living in my moldy house - and for a long time after I moved out and got rid of all my stuff - I was extremely sick. i was in bed 18-22 hours a day. I spent almost all of that curled in a ball in a darkened room. I had post-exertional malaise, various cognitive dysfunctions, inability to get restful sleep, weakness, and all kinds of other symptoms.

    What I didn't have were the "weird" symptoms that are reported in Osler's Web. I was able to stand up whenever I wanted to and didn't have to crawl to the bathroom, even though I didn't have enough energy to stand up for very long and felt light-headed. I never forgot the name of my own town. I didn't try to make telephone calls by using a parking meter. I didn't have seizures caused by watching TV. I didn't have severe heart pains that made me feel like I needed to go to the emergency room. I didn't have random moments when the desire to commit suicide was overwhelming. I often was too tired to read or do math, but I never lost the ability to absorb a sentence or add 2+2 when I focused on it. I never went into a blank state where I was unable to (say) remember what an actress was and then 30 seconds later forget what the question was. I never had to be taken to the emergency room because I'd suddenly passed out. I never (well hardly ever) got excruciating headaches that made me pray to die.

    That is, I never got them until I went to Tahoe in 2009 (after I was mostly well from mold avoidance and subsequent other treatments) and stayed at a hot springs there. Then I got all of them. (Except I didn't get taken to the emergency room because I was by myself and knew they couldn't help me anyway.)

    Lake Tahoe is not the only place this stuff is at. I've found it other places too.

    It just happens that there was (according to Erik) a lot more of it there in 1985 than in most places. And based on my experience and his reports, there's still a lot more of it there than in most places.

    Best, Lisa

    *

    I only know what I saw:

    That in certain specific biotoxin-laden Sick Building Syndrome environments, the "whatever" was capable of being very infectious by casual contact, with a savagely quick incubation period of 24-48 hours.

    After that initial phase, the capacity for transmission seemed to just disappear.

    I asked Dr. Cheney about this at the time. He confirmed that many viruses are no longer transmissible after the initial phase, but he dismissed the environmental component as probably being just a consequence of the flu-like illness.

    -Erik (2009)
     
  17. slayadragon

    slayadragon Senior Member

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    Yes! If this stuff that originally was present just in certain specific spots (like Tahoe) now has spread to many spots, then all those additional spots become epidemic areas.

    In addition, if this environmental agent triggers the activation of XMRV or causes some sort of systemic damage that makes it more likely to be problematic, then people who passed through these "hot spots" might get and stay sick even if they lived elsewhere.

    What you'd still see might be that people who lived in certain hot spots being especially numerous and especially likely to show severe symptoms.

    It's my impression this still is the case.

    If you like, watch for people on this board who report those weird symptoms. Then check to see where they live.

    A lot of them live in northern California. That's a place that Erik doesn't go, because it's harder for him to avoid this substance than it is in Tahoe.

    I see some in the UK, which makes me suspect that it's present there. (I wish I had someone who could confirm that, but I'm not going there to check.)

    There are others scattered about. But I would argue that the Bay Area, which was a known "epidemic" spot in the mid 1980s, still is an "epidemic" spot.

    It's just that nobody's keeping track of where the people with the weird ME/CFS symptoms live, so the phenomenon is being overlooked.

    Best, Lisa
     
  18. Enid

    Enid Senior Member

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    Can we let them quietly get on with their important research - for which in just yet I'm so grateful.
     
  19. slayadragon

    slayadragon Senior Member

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    I spent 18 months out in the Godforsaken desert in the western part of the US, trying to stay clear enough of both cyanobacteria toxins and mold toxins to give myself a foothold toward using other treatments to get well.

    I'd rather have had a drug that made my illness go away entirely, but nobody offered that to me. And while I didn't get wholly well, I got a lot better.

    Anyway, when I was out in the Godforsaken desert, I periodically ran into rattlesnakes.

    I'm glad that somebody took the time to develop treatments for rattlesnake bites, so that if I did get bitten I'd be a bit less likely to die.

    But I'm also glad that someone taught me about rattlesnakes, so that I could avoid them or act intelligently around them and thus not get bitten by them at all.

    And when I was staying at a campground where someone had taken the time to shoot a lot of the rattlesnakes so that they wouldn't come near enough to bite me - that was my favorite solution of all.

    Best, Lisa
     
  20. Hip

    Hip Senior Member

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