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Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
Discuss the article on the Forums.

First Public Presentation by WPI Researchers

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Cort, Oct 17, 2009.

  1. starryeyes

    starryeyes Senior Member

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    So what happened? I am intrigued. Do we have to worry about transmission through saliva? Don't you think if we did there would be many, many millions of people with CFS or FMS or atypical MS?

    Or are there and the XMRV is just in latency in the 10 million that are well?
     
  2. George

    George Guest

    Gotta wait some more

    hi ya
    Yeah the embargo is still on until the papers are published so that could be a while. I'm not too worried about the saliva thing. This virus is shaping up to look exactly like HIV and HTLV as far as transmission. It's just a retrovirus transmitting the way retroviri do. (grins)

    But that has some very sobering implications for us and the general public. I remember when the news about AIDS hit in 83 the level of stupidity was phenomenal. To this day many people with AIDS are discriminated against, refused medical treatment, jobs, relationships ect.

    My guess is that we will face some of the same thinking in the coming years and the National Cancer Institute and Health and Human Services is aware of this potential. That's why they put together a task force so quickly (like a matter of weeks, gov'ment never works that quick unless it's covering it's backside). They are most likely (me speculating) the powers that have stuffed a sock in the speakers mouths for now. They need to try to minimize and protect the current patients and spin it to the public in a way that won't bring panic.

    For the task force this has got to look like one really big cluster (umm) of poo. Problems with criteria, problems with patients who have been abused and abandoned by the system for decades! And here's the real kicker the people who are OMG sick are mothers and children, sisters and brothers, husbands and wives. Normal ordinary people who live in mainstream (insert country here).

    What the HHS has to deal with is backlash from people who are fearful that 'if it could happen to my neighbor it can happen to me' type thinking. The second thing they have to deal with is some really, really, really, really angry PWC's. All of our stories are going to come cascading out, in books, letters, TV, Youtube and on and on. And it's bad because there is culpability that can be pointed to. There are funds that were diverted, studies that were not followed up properly, a government agency that was negligent.

    My guess is the HHS task force is charge with coming up with as many answers as possible as soon as possible before the lid blows. And that lid is one study away from blowing most likely. Just one validation study and there are going to be several million really pissed people and the people who love them ready to tear this thing wide open.

    Hang on it's going to be a bumpy ride (big grins)
     
  3. fresh_eyes

    fresh_eyes happy to be here

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    Yahoooooooo!
     
  4. Martlet

    Martlet Senior Member

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    bring it on!
     
  5. Samuel

    Samuel Bedbound with NO DOCTOR

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    Yes, bring it on. But I don't want those who are covering themselves, or those close to them, near the steering wheel.

    To me for us this means planning, anticipating rear-guard actions, and gathering data. Depositions, freedom of information act requests, saving snapshots of websites, etc. at the very least. Congressional investigations with teeth. And knowing exactly who we want to do exactly what, and getting those people commensurate funding.
     
  6. Parismountain

    Parismountain Senior Member

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    Not too sarcastic here

    Take me back maybe two years ago and I'd be right with the thought that hearings and butt kickings and FOI requests would smoosh the dastardly deeds heaped on us by an incompetent govt. Make them walk the plank or the paddle line in public would have been my thought.

    Nowadays it's my strong belief no blame will stick.

    I know a board like this has Dems and Repubs on it, progressives and conservatives. This disease doesn't discriminate. Take a subject like how did the bubble form in home prices. To me (in my prior life an employed accountant and econ major) it was very easy to see who should get pinned with that one and yet as I watched, nope the bad actors not only skated they're currently writing new policy with no discredit or shame apparent.

    It's like the current use of swift boat. To a conservative it means outing by 99% ones peers of puffed up experience. To a progressive it means to destroy a mans documented reputation with lies.

    Now I am in one of those use of swift boat camps but I'm still amazed that only one definition has taken hold and is tossed about commonly now in speech.

    My point I guess is I no longer believe those responsible for the disatrous delay in treating our illness with the seriousness it deserved will be held to account. Hey, they might even get promoted.
     
  7. Parismountain

    Parismountain Senior Member

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    I'm right with you there thinking they need to pay a price. I got sick in '85 so I'm with you there on the stalling and laughing at this disease, how that impacted many many lives. I still travel out of state for my doc appointments. Gee we're in 2009, Reeves are you listening? The tone you've set (helped set) affects us to this minute. I shouldn't have to drive to another state to find a doc that at least believes in this illness.

    It's weird when you try to add up the damages suffered as if this were a jury award and they'll ask, how have you been damaged. It's just so many weird ways the establishment's attitude has afffected use.

    I'm with the poster who mentioned patient anger and rage over this whole topic. It's smouldering within and that ain't healthy.
     
  8. Martlet

    Martlet Senior Member

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    If they were to ask me, I would be very specific!!! And what would I ask in compensation? Seventeen years worth of potential earnings, from when I got sick to the discovery of XMRV, then three times potential annual earnings for every year the powers-that-be procrastinate from here on in. And none of that out of anger, but to send a clear message to governments that when enough people say they are sick, there is a good chance they are and should be taken seriously. This won't be the last novel virus to be discovered and I'd hate to think of another generation of sufferers.
     
  9. Martlet

    Martlet Senior Member

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    I wouldn't even know how to begin quantifying it. How much per sleepless night? Or what's the going rate for muscle pain? Sore throats? IBS? And so on. And how much for the loneliness this illness can bring - like the first 18 months over here when my husband had to work very long hours and the only people I knew were his family but they would not come to see me because they were scared of catching this "immune disease?" How on earth do you quantify that???
     
  10. Martlet

    Martlet Senior Member

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    I understand. I think everyone here understands - sadly.
     
  11. starryeyes

    starryeyes Senior Member

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    Thanks for your answer George and good points everyone. My money is on the idea that those who were supposed to be responsible will walk and/or get promoted. We are still on planet Earth right?

    Just wait until they get to the other side of life though.
     
  12. Samuel

    Samuel Bedbound with NO DOCTOR

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    I'd like to know that we tried to make the right thing happen. It seems that gathering documents now is a good and relatively simple precaution.
     
  13. FernRhizome

    FernRhizome Senior Member

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    Did the Pacific Lab ever post the WPI public lecture video? I don't see anything on their website.....~FernRhizome
     
  14. _Kim_

    _Kim_ Guest

    It's been embargoed until WPI publishes some of the findings that were presented at this lecture.

    ETA: I just noticed that you're new here. Welcome to the forums FernRhizome (great name, btw)!
     

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