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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Mikowitz accused of manipulating XMRV paper

Discussion in 'General ME/CFS News' started by Valentijn, Oct 4, 2011.

  1. SOC

    SOC Moderator and Senior Member

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    Was this an answer to my question:
    If so, I don't see either "100 years" or "known causes" anywhere in that.
    jace and OverTheHills like this.
  2. SilverbladeTE

    SilverbladeTE Senior Member

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    ME is more likely to be an autoimmune syndrome, triggered by some infectious agent AND another triggering factor
    the intial pathogen is controlled by immune system, or isn't causing too much harm, and so for many years nothing untoward occurs

    however, another infection or severe stress on immune system occurs which then loses control of the initial pathogen.
    note most ME cases start with a viral infection, but some also occur after or combined with injury, poisoning etc.
    Chronic low level mercury poisoning could well exacerbate almost any automimmune effect as it's very subtle and very nasty, and we now know a hell of a lot more folk are sensitive to it than the dental associations have said, the shmucks.

    That WOULD explain a lot of the issues with ME, especially if the autoimmune response is a "standardresponse type" the body has, because ME is so like the Flu/Lyme etc effects in general (but not 100% exact)
    it's a common respons mechanism, thet gets stuck to "on" because the the body knows there's persistant infection, or something's "jammed" the system on.

    Please remember, many infectious agents and parasites modulate the immune system, or cloak themselves to hide from it.

    Just because you have an infectious agent does NOT mean you are going to have vast global death tolls with folk keeling over within days of infection, for Pete's sake, jeesh! For example, huge numbers of people have persistant herpes infections. So, if ME has a specific cause, it could be very common but dormant/little harm in most folk (or cause very slow long term problems that would be missed).

    the precise cause of ME, could have been with us for tens of thousands of years, and adapted to us, and is thus not at all obvious. A retrovirus from rodents would make sense
    Rodents = granaries etc...

    And the human body is awash in bacteria and virsuses, many of which we do not understand or even have discovered, as yet.
    We're the product of about 4 billion years of evolution. Bugs are a lot smarter and common than you'd imagine ;)

    If AIDS hadn't killed quickly, there' be almost no damn work on it initially and for a long time after, because it was a disease of *insert nasty bigotted names here* so there was a deliberate blanking out of the issue, hence hard fact research got stonewalled by the bigots in US government/religion, and there was in the very early days confusion about WTH was going on with the victims, as it wasn't killing by direct action, but by immuno suppressance etc.

    Hindsight makes it all ooooh so clear and obvious to us now about AIDS, but back then, lot of folk had their head up their asses and got in the road of those trying ot understand AIDS.
    So, 100 years form now, folk may look back and wodner why we were so stupid and unable to see ME was caused by a "stealth" retrovirsus that 20% of the populaiton had and that caused a wide range of problems depending on the individual's further infections, genetics, etc.
    It's possible the base cause of ME coudl be responsible for a great deal of Human health problems, just liek herpes causes lot more harm than just "cold sores"
  3. barbc56

    barbc56 Senior Member

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    That an RV/virus is not responsible for me/cfs. People are not dying/suffering as quickly as polio.
  4. SOC

    SOC Moderator and Senior Member

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    [my bolding]

    So doesn't that make a virus responsible for me/cfs? That is, no virus --> no me/cfs by your statement. :confused:
    jace and OverTheHills like this.
  5. barbc56

    barbc56 Senior Member

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    Thanks for pointing that out. I revised my above statement. I will come back and edit the second part later. My brain fog is so horrible today and I need a good night's sleep. Something many of us could use.
  6. SOC

    SOC Moderator and Senior Member

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    Plenty of viruses don't cause people to die, including polio. Many people infected by polio didn't die or didn't die quickly.

    The many viruses and retroviruses act in many different ways. The retroviruses HTLV and HIV, for example, don't act quickly. One is invariably fatal without treatment the other is rarely fatal, but is in some cases. Flu viruses are highly contagious airborne viruses that are usually cleared quickly by the body, but the chicken pox remains in the body throughout life. Viruses and different bodies' reactions to them are amazingly variable.

    I still don't understand what you're trying to say.
    OverTheHills likes this.
  7. Wildcat

    Wildcat Senior Member

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    The Royal Free Disase is a very well investigated and documented epidemic of ME (London 1955). It was very thoroughly clinically, medically, investigated at the time and in the following years. There was also very detailed epidemiology. Would like to post more on this important subject but - you know - wiped.
  8. Ian

    Ian Senior Member

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    just looked up the 'Royal Free Disease'. I like the way patients were almost entirely unaffected.
    According to
    http://www.bmj.com/content/2/5050/927.full.pdf
    Out of 300, 292 were members of staff. So they were clearly exposed to something the patients (the ones most likely to be effected) were not. My guess is they were vaccinated. This is not the hallmark of an infectious disease.
  9. Bob

    Bob

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    Governments were experimenting with new polio vaccines at the time, but I've never been able to find out if these staff had received the polio vaccine.
    If my memory is correct, one experimental polio vaccine was withdrawn at about that time because it was causing problems. I can't remember the details.
  10. Wildcat

    Wildcat Senior Member

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    As I said, sorry I cannot go into referenced detail at the 'mo, but detailed clinical assesments strongly suggested a virus, not polio and not polio vaccine..
    Enid likes this.
  11. floydguy

    floydguy Senior Member

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    I suggest you do more research on Polio. Only a very few people who got the Polio virus died from it. Furthermore, there were many clear pockets of infection (sound familiar?). Dr. Hyde and many others believe that ME is related to enteroviruses (ie the same category as the Polio virus). Certainly one can argue against it or choose not to accept it as a model but you haven't given a very good reason for dismissing it out of hand.
  12. Enid

    Enid Senior Member

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    Looking forward to that Wildcat - in my early (Royal Free type illness) my Docs were looking for MS, Polio, Chicken Pox (rash on chest), Enteroviruses etc from my collection of symptoms. Probably most latent infections from an compromised immune system - sudden onset from one moment to the next still indicates to me some single pathogen (retrovirus) setting the whole process in motion.

    To Wildcat @ 90.
  13. ukxmrv

    ukxmrv Senior Member

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    Barb,

    A RV doesn't have to act like polio. Compare HIV and HTLV - they don't act the same.

    Your statement doesn't make sense when patients are responding well to ARV and AV drugs. I'm happy with my own response to AV drugs and intending to add further as I can afford them and the science progresses.

    Your illness may not have an active viral component but it doesn't mean that patients don't have active viri. It may be a difference between the epidemic or acute onset patients and others.

    So if you have problems connecting a RV or other virus to your own disease please don't disregard other patients who do.

    Our lives may depend on it even if yours doesn't.
  14. floydguy

    floydguy Senior Member

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    As mentioned below, many people have had mercury fillings out and a lot of work done on the mouth with no success. How about pointing to some credible sources where people have recovered by addressing these issues? So sad you know all the answers but aren't telling us what they are (what is this mysterious metal, how did it get there?). Furthermore, is there any evidence that ME is a degenerative disease? Please provide reference to that.
  15. ukxmrv

    ukxmrv Senior Member

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    Ian, I don't know if you know this but you are stepping into the area of speculation on how HGRV's were delivered to the population.

    Not sure how much you know about how much patients have been looking into mice materials and vaccinations.
  16. Tristen

    Tristen Senior Member

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    At first glance and without consideration of scientific studies, one would ask the obvious question of what could possibly affect the staff, but not the most compromised and vulnerable, in the immediate environment. If those numbers are indeed correct, it couldn't possibly have been an infectious agent spread by droplet or any other infectious or toxic agent spread in the air or by physical contact, both of which would be a constant potential mode for transmission in the hospital setting.

    Even current day Universal Precautions used in the hospital couldn't pull off those numbers of infection control. No way, not even close. And the Royal Free outbreak was over 50 years ago. So one is left with the question of what the staff were exposed to, that the patients were not. Just musings and observations.

    This topic recirculates every few years. I no longer have those old files on these kinds of topics, but for whatever reason, I'm curious on this one. So, when you feel up to it, I would appreciate taking a look at what you have Wildcat. Thank you.
  17. Ian

    Ian Senior Member

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    That credible enough ?
    http://www.melisa.org/chronic-fatigue-syndrome.php

    Obviously it's not the only issue but for a lot of people exposure to particular metals causes them massive problems. Normally dentists are to blame because they assume everyone is compatible with all metals, which is a terrible terrible mistake.
  18. Daffodil

    Daffodil Senior Member

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    of COURSE its a retrovirus. i cant believe there is anyone still questioning that. wtf

    it isnt like HIV. it retreats from the blood into the tissue..thats why it isnt as readily transmissable.

    there have been breakouts of it because in the acute phase, it is very easily transmissable.
  19. floydguy

    floydguy Senior Member

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    Many (if not most) CFS people are sensitive to many things. Metal might be one of them but it's certainly not the only thing. Worth exploring perhaps but based on current research it's hardly a smoking gun. I've had my mercury fillings out by the way - no relief here.
  20. barbc56

    barbc56 Senior Member

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    Science is not showing that me/cfs is caused by a retrovirus nor that it's transmissible. Outbreaks are not that common when you consider the # of people with me/cfs. There is no evidence linking breakouts with an acute stage of me/cfs.

    I think genetics might be worthwhile to explore for me/cfs.
    Firestormm and kurt like this.

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