Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Heidi Bauer's blog: 'It's the virus, Stupid'

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by fred, Sep 29, 2010.

  1. fred

    fred The game is afoot

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    http://cfschronicles.blogspot.com/2010/09/its-virus-stupid.html

    Here's the first para.

     
  2. anciendaze

    anciendaze Senior Member

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    Hi Fred,

    She doesn't even have to insist on causation. If the virus is no more than a marker, it is present in patients diagnosed decades before a test was available at higher rates than researchers using the CDC 'empirical definition', at present, can achieve in separating CFS from primary depression. Since the patients identified via the marker are definitely sick, this says it defines a coherent diagnostic category. Investigate the marker and you have a chance of understanding the illness. Ignore the marker, and you are back in the wilderness where research has stagnated for decades.

    Besides agreeing overall, I have one particular point to highlight.

    Robin Weiss mentioned the hunt of a human equivalent of MMTV as an example of a rumor virus. Repeated indications that some kind of retrovirus is involved have been around since 1972. If, as is now well demonstrated, many researchers have trouble finding any human gamma retrovirus we should wonder if these are involved with breast cancer. We have animal models of gamma retroviruses with vertical transmission via milk. If breast tissue is not infected, this would be decidedly odd. Find out why the same people keep failing to produce useful results concerning XMRV or PMLV, and you might contribute to the cure of a major disease whose existence is not in dispute.

    Why do people keep getting the whole business upside-down and backwards?
     
  3. George

    George waitin' fer rabbits

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    Hey Fred, Thanks for posting it was a good read. I agree with the anger. Just wish I had enough energy these days to join in. (grins)

    Good points all AD (as usual, grins). I honestly believe that the "silliness" is just a stalling technique. I think if they can keep just enough doubt to make the media hold off on reporting until they have more of a "handle" the virus itself then they will win the "looking good" PR campaign that this is all about. I mean why not, right? If the wrong information gets to the media then everyone looks like dorks (i.e. HIV) but if you can control the medias access to real information until it suits you then you can look really good. (HPV, wow you didn't even know you had it and look we have a cure! Aren't we awesome?)

    Myra McClure and company are singing from the roof tops and every channel they can get on thus delaying any hope of research in the UK. That will put the UK behind in research and delay the day of reckoning for NHS and insurance companies. I would worry if it wasn't for the fact that those singing the loudest are the ones with something to loose. Dr. Huber isn't running around telling everybody who will hold still long enough to listen that this is a contaminate because she doesn't have that much to loose. Oh, she's not happy that she can't find it and has a bit of egg on her face but at least she's not doing the talk show rounds. (grins) I seriously wonder if McClure is being either feed by the powers that be or has been promised something in payment for all her hard work. (wink)
     
  4. ukxmrv

    ukxmrv Senior Member

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    Myra and Robin may also be trying to scare off competitors for developing a test to sell in the UK. Myra had one advertised on the Imperial College website for XMRV.
    If the NHS does eventually test patients (faints at the thought) they will need to get one from somewhere.
     
  5. urbantravels

    urbantravels disjecta membra

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    I agree with George that we are currently experiencing delaying tactics. The skeptics are making themselves heard as loudly as possible; the researchers who are continuing to find positive results are still toiling away on the long road to publication.

    Until another confirmatory study is published - and a *really good* one at that - there won't be anything new to really report, and there won't be any major action taken on the part of any public agencies. (I've got my nose in the wind for the moment that US blood donors are "deferred" permanently, not just wimply "advised" not to give blood with any past history of CFS. That's when we'll know things are really moving.)
     
  6. anciendaze

    anciendaze Senior Member

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    This is the tactic I thought I perceived behind the previous Lancet editorial, (which caused me to go through the roof for reasons Cort didn't understand): sound reasonable, but don't suggest any change, except more money for research on "chronic fatigue". We've already seen where money for research on such a nebulous subject goes. Meanwhile, look at what else has happened in relation to ME/CFS in the U.K. Dr. Kerr, who has done good work on such things as genes actually expressed in ME/CFS patients, lost his job. Is there any indication the results referenced in the "going viral" editorial would cause him to be rehired? None.

    Instead the note of smug satisfaction I thought I detected has now given us the sage advice of an old hand at the business of not finding virus, or making the subject any clearer. The tragedy is not that proponents of retroviral theories have failed to convince him, it is that the response has left the field in exactly the same limbo as before, except that people are gun shy about publishing new results.

    The idea that gamma retroviruses may cause human disease is not terribly far-fetched. We have known this family of virus could infect humans; that is why they have been considered as vectors for genetic engineering. We have known they infect mice, cats, gibbons and a list of other mammals, including primates. (While you're checking on disease vectors, look at the number of diseases for which domestic animals known to be vectors.) We know they cause leukemia and/or neurological diseases in other mammals. We know they mutate rapidly. We now know some concentrate in lymphoid and reproductive tissues. We know some animal models parallel to human diseases involve gamma retrovirus passed by fluids. If there are no such viral diseases in humans, when all the above are true, there must be some reason. So far, we know no reason at all. This is something negative which needs explaining, if true, but this is clearly not going to be done by people who are complacent about the current state of ignorance.

    Either tell us how to find such viruses, or tell us why they do not infect humans. If you can't address either question, get out of the way of those who are doing research.
     
  7. urbantravels

    urbantravels disjecta membra

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    Considering that the human genome project found several *thousand* endogenous retroviruses...and that endogenous retroviruses are only the retroviruses that happened to infect a germ cell which then became an embryo that survived to reproductive age, a very rare set of circumstances...it seems pretty clear that infection of humans and human ancestors by retroviruses has been a very common event throughout our evolution.

    What do you suppose the odds are that we currently have more than two or three retroviruses currently in existence that are able to infect humans, considering the *millions* we must have been infected with over the course of our evolution in order to allow for several thousand to make it into our genome? The modern world has done almost nothing to prevent viruses from jumping species from other animals into humans - if anything, it's only made it easier for them to trot the globe and quickly hit a lot of people in urban areas, once they've gotten into humans.
     
  8. anciendaze

    anciendaze Senior Member

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    This is a very interesting argument, which I avoided. Part of the problem is counting. We have at least three difficulties: 1) RNA viruses are notoriously unstable, mutating often for no apparent reason; 2) defenses against retrovirus include hypermutation of inserted provirus; 3) after a sequence has been inserted in the germ line, it is subject to an unknown number of later transcriptional errors; since it is not necessary for host survival, these are generally not corrected. Data on ERVs in the genome are noisy. My own feeling is that we are looking at a much smaller number of extremely rare events, complicated by the factors above. A second possible criticism would be that these events were spaced out over millions of years, making the chance of finding one in a century very small. I've already seen too many arguments over extremely rare events go astray. People just aren't built to think about things beyond the limited scope of daily life.

    If you accept the reconstructed sequences of ERVs as actual viral genomes, you do have an excellent argument that people were infected by a virus 95% homologous to XRMV at some time in the distant past. This is slightly closer than the 94% homology with MLV, but the difference is not very significant.
    The real kicker on this argument is the sheer number of human beings, and possible interactions with other species. As you point out, these are not isolated human beings, we have demonstrated we are all one family in any number of ways, including the transmission of diseases. Once a virus jumps species it has no natural barrier to spreading in this recently unified population.

    During the course of a discussion over possible sources, one person said "well, people don't eat mice". Unfortunately, I know a counterexample, a place where roasted mice are a popular snack. When I suggested domestic cats as an intermediate vector, the "people don't eat cats" response came up. (Unfortunately, while this is largely true, there are, once again, exceptions.) People do have many interactions with domestic cats which could transmit virus found, for example, in saliva. Even though most of us on-line no longer know our dinner personally, there are large numbers of domestic animals raised exclusively for human consumption. Testing livestock for signs of slow infections by viruses unknown to researchers is simply not being done.

    Sheer quantity can have a quality all its own. The scale of human interactions with many other species is simply hard to imagine. This is one reason I personally don't place much weight on the idea of things escaping from laboratory experiments and becoming widespread.

    (Yes things have escaped. In some cases, the general population appears to have 'dodged a bullet' by chance, but consider those other sources. There are simply too many 'natural experiments' constantly taking place with no control and no safeguards whatsoever. Most of us have to ignore such ideas simply to avoid turning into paranoid recluses. Right now, in a few minutes, I could take you to several different little old ladies keeping cats alive which are clearly infected with a variety of mysterious things. They have no idea they are conducting experiments in virology.)

    I'm hoping some of us can agree to disagree on some questions above without missing the essential point of urbantravels' post -- there are strong reasons to be looking for currently undetected retroviral infections in humans. I see no reason to rule out gamma retroviruses, and strong reasons to suspect them.
     
  9. urbantravels

    urbantravels disjecta membra

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    As do I - and I have evidence. (Image not for the faint of heart.) "Mick on a stick" is what they call it in Malawi. The origin of the term is unclear but my personal theory is that it's "mick" as in "Mickey Mouse."

    http://www.flickr.com/photos/thenitpicker/5041881965/

    Or, for that matter, for vaccines being a likely vector - an exotic theory in my view, reaching hard for a very unlikely route for MLVs to have gotten into humans when likely routes are as common as - well, as mice. I don't think it's impossible for vaccines to have some deleterious effect not entirely understood at this time, but there sure is a lot of paranoia directed at them, which I think is misguided.

    There seem to be some very common misunderstandings about viruses - that viruses are sorta rare, that being infected with a virus is a relatively rare event, and that a virus necessarily makes the host sick. When in fact there are many thousands of viruses out there; we are all breathing, drinking and eating billions of viruses every day; all living creatures have their own viruses; and not all viruses cause disease in their host. There are countless animal viruses that don't harm the animal host but then wind up being pathogenic when they jump to another species. These are not rare events at all.
     
  10. *GG*

    *GG* Moderator

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    Interesting thing about the Human Genome project, did not know that! Good thread.
     
  11. anciendaze

    anciendaze Senior Member

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    My own guess, which hardly rates being called a theory, is that vaccines sometimes play a role in exposing silent infection by a retrovirus which impairs immunity. This produces the visible correlation which convinces patients. If it were correlated with various aspects of production and distribution of vaccines, researchers would be in a great position to trace this. Because of legal requirements on vaccine producers, plus their own concern over lawsuits, samples are available from many stages, and these have been used in the past to trace contamination.

    Without digging down to the level of second-quessing everyone, I can assume both groups are correctly reporting what they find. The correlations visible to patients don't show up for investigators because they only apply to less than 10% of the general population which is silently infected. If you don't distinguish these, and those within the group who are actually vulnerable to the vaccine's challenge to the immune system, over 90% of the data is noise.
     
  12. urbantravels

    urbantravels disjecta membra

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    Yeah, that's pretty much what my guess would be at this point too - that vaccines might give your immune system a "bump" which at that moment may play a role in activating/triggering the underlying problem. But when that becomes ZOMG VACCINES ARE EVIL AND CONSPIRACIES AND MUST BE SUED then I start thinking, Well, there's about a zillion other things that might poke at your immune system and create the conditions for this to happen.

    The 'triggering event' could as easily have been exposure to some other pathogen, or environmental factor, or any number of other things... So what would be the benefit of avoiding a vaccine? Short of living in a bubble, how are you possibly going to avoid exposure to anything that might be a 'trigger'? Vaccines are nice and compact and blameable, but I highly doubt they'd ever turn out to be the *only* possible trigger for underlying XMRV or other hidden infection.

    ETA: No, I did not partake of the roasted mice on a stick. My curiosity, though considerable, does not extend *quite* that far.
     
  13. natasa778

    natasa778 Senior Member

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    It is called letting go of your belief system.

    http://www.forums.aboutmecfs.org/sh...cell-lines-used-for-production-of-biologicals
    it gets more interesting as it goes on. I highly recommend reading whole articles on the links posted, esp documentation by WHO and similar. Lots of food for thought for the open minded ;)
     
  14. anciendaze

    anciendaze Senior Member

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    This is not a knee-jerk reaction, the charge isn't entirely absurd. I simply don't get far enough to need such explanations before I find something simple which makes a great deal of sense. I feel the difference in our views is a matter of perspective and weighing alternatives.

    It would be more than convenient for me to blame the U.S. Government for creating my problems, it might mean financial salvation. I went through dozens of vaccinations in a short time, without much choice in the matter. The ordeal was memorable enough so that I was very careful to keep my shot record with me while those vaccinations remained effective.

    I've already let go a large number of belief systems concerning leaders, organizations, institutions and agencies, so that is not an issue. One other loss of belief had to do with the alleged power and control of modern medicine, and that is germane.

    It hits you at the point where you are standing in all-natural organic fertilizer, while dealing with your latest discovery about local sanguivores, and suddenly you realize that those people all around you generally did not get their immunizations the way you did, are not drinking officially potable water, or eating food which is subject to reliable inspection, packaging and preparation, flown in specially for them, and biologists haven't even identified many things that walk, fly, swim, crawl, creep, climb or wriggle nearby. (Never mind microbes, the state of ignorance is so great it is even possible to overlook large species like the saola, and possibly even small elephants. Some biological discoveries can be made on the local menu.) It was at this point I suddenly noticed that I had previously lived my entire life inside a bubble not shared by a very large number of people. The number of natural experiments in biology and genetics is unbelievably large.
     

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