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Viology podcast - XMRV special with Singh 8th August

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Esther12, Aug 8, 2010.

  1. CBS

    CBS Senior Member

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    I have to agree with Jennie and Laurel, this is a mis-characterization of Dr. Bateman's work. Dr. Bateman runs a clinic for all fatigue patients but for research and clinical purposes she clearly differentiates between a number of patient sub-groups. I suggest that you watch Dr. Bateman's lecture from 12/2/09 on XMRV and how she groups her patients (http://www.offerutah.org/batemanxmrv.htm - roughly at the 30 minute mark). Dr. Bateman makes similar distinctions in the recent CAA XMRV webinar from 7/15/10 : http://www.cfids.org/webinar/series2010-past.asp#10 (slides 40-43). And then, if you're still not convinced, you can find her (OFFER UTAH's) upcoming physician and patient education conferences here: http://www.offerutah.org/conferences.htm

    And after all of that, if you're feeling the slightest bit of remorse for having maligned Dr. Bateman when you didn't know much about her or her understanding of this disease, I suggest that you might want to donate to OFFER and assuage a some of those guilt feelings here: http://www.offerutah.org/donations.htm
  2. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    V99 started a thread today about an ex army chap called Ed Stafford in the UK completing his Amazon trek. This guy Ed actually walked from one end of the Amazon to the other and was joined by his guide Cho along the way! Sir Ranulph Fiennes is really impressed and helped to fund him.

    One of the charities he was raising money for was the UK ME Association and specifically to help fund the set up of a Brain & Tissue Bank for study of post mortem samples in ME patients in the UK.

    Dr Shepherd reports (in a previous edition of their magazine ME Essential) that some feasibility and cost studies have already been undertaken to see whether it would be practical to have a stand alone ME Brain & Tissue Bank, or whether to have the ME tissue samples included as part of a central/national Brain and Tissue bank for many other illnesses too such as MS, (I think the Medical Research Council runs/funds the main one?).

    Anyway, this also ties in with questions and the discussions with Dr I Singh today on Dr Raccaniello's podcast re How do we test for XMRV if it is actually in the brain & nervous system (& not the blood)? :)winking:) Guess it will be a long time before we know how to run a test in a GP's office that can check for neurotropic viruses in live patients.

    ps I wrote to the Vehicle Licensing agency (UK) too to remove the 'organ & blood donor consent' from my driving license - at least until I know what's making me ill.
  3. V99

    V99 *****

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    I'm very confident that they will.


    Don't you find it ridiculous that if you have a neurological illness you have to inform the DVLA. Of course they don't count the recognised neurological disease ME in that.
  4. anciendaze

    anciendaze Senior Member

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    Based on that I can tell you one place she would never be hired.

    BTW: She mentioned a number in passing which points to another controversy for that group, her 25% rate of finding XMRV in prostate cancer. Even working from tissue samples, the CDC group found it in only about 1%. This gives you some measure of the relative effectiveness of the assays they are using. They are caught in a bind between demonstrating a good assay and denying XMRV presents any risk to the public. It is easy to predict others will produce the 'gold standard' test for this virus.

    I don't think there is any serious controversy about prostate cancer as a real disease, or about diagnosis by pathologists working from tissue samples. We don't have to know anything about causation to find correlations. This leaves the assay open to question.

    Under these circumstances, the remarkable certainty expressed about XMRV and CFS would be astonishing, had we not seen this before.

    Her 'wide net' for finding XMRV anywhere it turns up is likely to create more problems for bureaucrats who want to keep everything in neat categories they can control. I'm betting on more disease associations beyond any we have heard to date. The manifestations of this illness were described as 'protean' 20 years ago. It would be surprising if the causative agent fit in a nice, neat category now. This flexibility is one reason I believe the association of illness with XMRV is real. The cause would have to have some unusual characteristics very like those we are seeing.
  5. anciendaze

    anciendaze Senior Member

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    My thoughts there go back to some close calls I've had when I pushed myself to get in the car when I didn't feel like driving. I also recall that Elaine DeFreitas had a sequence of problems I've seen in others with this disease: a failed marriage, an automobile accident with brain injuries which seemed to be healing, followed by disabling chronic pain. I think we should suggest tests for XMRV in those killed in traffic accidents. This is one case where you can get access to samples from the CNS.
  6. V99

    V99 *****

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    I took myself off the roads about 12 years ago. Good thing too as I also have toxo.

    I do wonder about DeFreitas. Makes you concerned for everyone studying us. I hope one day we can honour DeFreitas for what she tried to do. It ruined her life in so many ways. It will be an odd experience to be in her shoes the day the positive paper comes out.
  7. ahimsa

    ahimsa Senior Member

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    Interesting comment. It makes me wonder, are there any research studies looking for XMRV by using a spinal tap? Would XMRV be easier to find in CSF (cerebrospinal fluid) than in blood samples? (not that I want to volunteer for that study! ouch!)

    This is from someone who knows very little about basic biology, let alone virology, so don't be afraid to explain to me why this is a dumb idea. I won't take it personally! :D
  8. urbantravels

    urbantravels disjecta membra

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    It's entirely possible that there's XMRV in the spinal fluid. That is one of the places that HIV likes to hide out in the body, too.

    And yes, OUCH on volunteering for that study. Haven't heard word of any such thing yet.

    I had to listen again to see if they said exactly which organs/tissues the autopsy series study was looking at, but they didn't specify. I imagine the brain/spinal cord is probably being looked at, but all they said was "multiple organs."
  9. alex3619

    alex3619 Senior Member

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    Hi

    These are two approaches that could find a lot of new data with minimal cost. We needed something like this.

    Bye
    Alex
  10. Daffodil

    Daffodil Senior Member

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    just listened to the podcast. great stuff! looks like some of those researchers read this board.

    i know that dr. mikovits has found XMRV in spinal fluid. personally, i think the brain will turn out to be a major reservoir, which is unfortunate.

    i'm quite disappointed that they made it sound like it's going to be 5 - 10 years before they approve a drug for the disease. they don't seem to be acutely aware that so many have already died.
  11. garcia

    garcia Aristocrat Extraordinaire

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    They didn't seem to be aware of much of anything to be honest. Very very ignorant panel as to the severity of this disease. I wish people would write in to Racaniello with their own personal stories. The more harrowing the better. It's the only way these people will learn.
  12. Alesh

    Alesh Senior Member

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    I agree with this. In my opinion during the course of ME the XMRV gets hidden in the brain and I think it will take time before the scientists realize they have to look for it in CSF and still more time before they realize that brain biopsies will be necessary to diagnose its presence. But perhaps some totally new noninvasive diagnostic procedure like MRI with nm resolution will soon emerge or something even more surprising and ebullient with the advent of nanotechnology applications.
  13. urbantravels

    urbantravels disjecta membra

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    So which is gonna be more fun - spinal taps or brain biopsies?? (I'm sure spinal taps are probably worse, actually. I have no first-hand experience with either!)

    I think there's room to hope that most of us can get by with blood tests, once everyone gets their story straight on what tests are most reliable and accurate. Certainly testing spinal fluid and brain tissue will come in helpful for research, but as long as there's another means to test available, they shouldn't need to look at everyone's spinal fluid or brains...

    (The story that just came out about researchers finding a particular protein signature in spinal fluid that seems to predict the development of Alzheimer's was very interesting - brave patients, to volunteer for a study like that!)

    I was just thinking back to when I was first getting sick and they ran the first routine set of tests - thyroid, ANA, blah blah blah, HIV - all totally routine for a first quick round of ruling-out. Imagine a future where a person who feels fluish and fatigued for a long period gets a quick and routine XMRV test and can start treatment immediately.
  14. taniaaust1

    taniaaust1 Senior Member

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    I did that as soon as i listened to the podcast the other day. I wanted to point out why some were actually having stem cell treatment and why many more were thinking about it.

    As also it was mentioned that ones with CFS dont usually donate blood. So I told them in my email why I had given blood donations with the CFS (cause it made me feel like i was doing something for society.. so i rested for a few weeks so i didnt have any symptoms and then went to blood bank and gave donation as it made me feel good seeing i was practically useless and too sick to do anything else... then came home to crash). That will definately have them thinking more about things.
  15. garcia

    garcia Aristocrat Extraordinaire

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    Good on you tania! Will definitely get them thinking. I emailed Racaniello first this morning as soon as I woke up. Hope his reply is better than the last one he sent me.
  16. Alesh

    Alesh Senior Member

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    In my experience lumbar puncture consists in minor discomfort similar to intramuscular injection. Actually I remember an intramuscular injection of purified human leukocytes was much worse experience. Only the thought that someone is putting a needle in your backbone is rather unusual. I had it two times and in fact I would be happy if my neurologist called me that he needs my liquor for some new tests. Brain biopsy is something I would be afraid of but if it could help...
  17. eric_s

    eric_s Senior Member

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    Wow Tania.. I really don't think you have to feel so guilty that you have to give blood just to do something. If you were healthier you would live a different live, like we probably all would, but if you're not i think you should not forget what's good for you. You can still do more useful things once you're better.
  18. Daffodil

    Daffodil Senior Member

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    dr. racaniello, i think, is aware of how much we are suffering. he seems more compassionate than most researchers when i email him. some researchers seem too interested in not tarnishing their reputations and winning awards. we need more people like racaniello and mikotivts on our side.

    i still cannot believe that not one clinical trial has begun yet. there was talk of GSK starting one, now its merck in talks with singh. what about the people who are dying now? its spreading as we speak..what is everyone's problem here?

    and it really angers me when researchers talk about how dangerous antiretrovirals are. do they think we are just considering using them for the heck of it? why don't they have the faintest idea of how sick we really are?

    they will be doing spinal taps at WPI but not brain biopsies (at least that's what i last heard). i think brain biopsies are done only if people are at immediate risk of dying, right?

    this is just bad all around. how do they even propose to get enough drugs into the brain? they can't even do that for HIV. we need intravenous drugs but no one will want to pay for that.

    i feel like i am in quicksand. i can see a lot of hope in the distant future, but i don't know if solutions will come in time for some of us....even if we just want a few good years before we die!
  19. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Worst crash I ever had was after lumber puncture in 1995. By US researcher who was investigating a mysterious virus in CFS in Brisbane, Aust. He found it in me. Then he ran out of funding and went back to US. Steve Robbins, I think his name was. Can't really rely on memory for that. But if anyone has any follow up info on that I would be grateful.
  20. Hope123

    Hope123 Senior Member

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    A lumbar puncture has much, much less risk than a brain biopsy. There is a small risk of nerve damage, infection, bleeding; most common side effect is the bad headache that about 30% of people get after it. I've had a tap before and had a headache for days but it's tolerable.

    The stuff about it being in the spinal fluid is interesting -- one of the NIH studies funded this June looks for infections in the spinal fluid of people with CFS but XMRV is not specifically mentioned.

    One other way of getting drug into the brain is intrathecally through the spinal fluid say; it can help avoid blood-brain barrier.

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