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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.
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Dr Vernon's webinar Thursday 18th at 2 pm EST

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Countrygirl, Feb 17, 2010.

  1. julius

    julius Watchoo lookin' at?

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    Yep, you're right.
  2. Hope123

    Hope123 Senior Member

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    I think the term we're looking for is "pathognomic" which means that a test/ physical finding, when found, practically guarantees a diagnosis of a disease. Unfortunately, there are very few tests/ findings even outside of CFS that qualify for this.

    http://en.wikipedia.org/wiki/Pathognomonic
  3. gracenote

    gracenote All shall be well . . .

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    This is what I think I want. (Again, the quote is from Wiki.)

    Is THAT too much to ask?
  4. julius

    julius Watchoo lookin' at?

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    Yes. That would be sweet.

    But even XMRV couldn't be that, bcause you can have XMRV and not have CFS. So I guess diff. diag. is what we should be hoping for. ie; XMRV along with other signs, symptoms of CFS.

    But in the end, biomarker is easier to type and sounds cooler.
  5. jspotila

    jspotila Senior Member

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    Sorry it took me so long to get over here, everyone. I've not been feeling well of late (as if I ever do feel well but that's another story).

    YES! All our research grants were funded by YOU, the CFS community. Almost every donor has a personal connection of some kind to CFS. As Kim said, we are working hard to shift the burden of funding away from the backs of patients, but for the time being you are it. Kim also mentioned that we do not allow funding commitments to be made to researchers until the Association has the money in hand. So these six grants are being paid for by that $1,000,000+ you gave for the research campaign in 2007 and 2008.

    YES! Any donor can restrict how his/her donation is spent. The Association honors that restriction, or returns the money if it can't. This is legally required. We have, in the far distant past, returned 5-figure gifts that we could not fulfill a restriction on.

    BUT there is something very important donors need to understand about restricting gifts. The Association is focused on research and public policy. All revenue supports those two (not really separate) efforts. One of the reasons our research program is so amazing is all the "invisible" work. It's not just about work at a lab bench. The Association has stringent requirements of researchers for progress reports, site visits, submission of findings for publication, etc. It's hard to convey how much work is done by Kim, Suzanne, and the staff to keep this program on this great trajectory. If donors restrict gifts, it has a direct impact on what else we can do. If you want the Association to keep doing webinars, meeting with people on the Hill, pursuing Department of Defense funding, (etc etc etc etc) - then PLEASE make an unrestricted gift!

    Today's webinar will be posted (slides and audio), and I'll try to post the link when it goes live. There will be more info about the biobank soon, and I'll hold my comments on that until then.

    Oh, and no one has commented yet on how several of our grantees will be testing blood samples from study subjects for XMRV. Dr. Vernon mentioned this several times during the talk. I have no information about method (PCR, etc) at this point. If I get more info on this, I will let you know.
  6. CBS

    CBS Senior Member

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    Hi Jennie,

    I appreciate your comments and the importance of all the various efforts of the CAA. I have gone from being a strong skeptic to a real fan over the last year. I know that everyone at the CAA is doing their best and that there is no such thing as having enough funding in the CFS world. I also want to say that while I still think there is room for even clearer case specific physician education, I very much appreciate the efforts and real changes in this area that have been made in just the last few months.

    My sincere thanks to you and everyone else at the CAA.

    Regards,

    Shane
  7. Anika

    Anika Senior Member

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    Earmarking tax refund money for CAA

    I couldn't make the webinar, so I really appreciate Robin's updates and comments from others. Someone provided a link to the slides used in the webinar, which are interesting even without the benefit of Suzanne Vernon's talk.

    I remember being blown away when the CAA research grants under Dr. Vernon's direction were unveiled. It wasn't just the projects individually - each of which is interesting. It is how well they are thought through, the collaboration and information sharing that is required, the fact that resources are being used to make all other research more effective. Also, I was pleased to see that new researchers were being brought into the CFS fold, with different disciplines and some at an earlier stage of their careers.

    The webinar update only reinforces that feeling (as was no doubt one of its purposes). This CFS research program is a model for organization-supported research. I think I remember hearing that Dr. Vernon got a standing ovation at the last IACFS/ME conference - for this, she deserves many.

    I followed Cort's example some time ago and began making the monthly contributions to the CAA. I also made it a priority to donate to Dr. Klimas and WPI last year (and hope to repeat).

    For the next round of CAA research, I am earmarking a chunk of my expected income tax refund. We really can't afford to lose the momentum that has been created.

    Anika
  8. Sasha

    Sasha Fine, thank you

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    It's a good ambition to try to "shift the burden of funding away from the backs of patients" but it's worth us all remembering that even in diseases that get huge amounts of government funding, nearly half of the total research funding still comes from charities, at least in the UK. I read this in this very interesting paper on research funding by ME Research UK's Dr Neil Abbott. He says that in 2007/8, the MRC's total research budget was 1.3 billion; and in that year, medical research charities spent 791 million, that is, almost half the total research spend.

    Dr Abbott says, "Even if the biomedical investigation of ME/CFS got its fair share of Class 1 funding [from the MRC] — something that many of us are still pressing for — that share would fund only a small part of the biomedical activity that is necessary."

    So, even though I applaud the CAA for wanting to take some of the funding burden from patients' backs, we're not just it for now, we'll be part of it for ever and the more we donate to research, the faster we'll all get better.

    For those many of us who are broke, in the UK there's an ME/CFS fundraising blog called Just Four Quid that gives you moneysaving tips to help you be able to afford to give; in the US, there's the ME/CFS Pocket Money Research Fund that asks for just tiny bits of money, as well as the main research charities themselves.

    I've been donating what I can afford in little bits all year and it's been adding up. Please don't let us get the idea that a tidal wave of govt and big pharma cash is going to come along and solve all our problems - if that wave is on its way, and I hope it is, it still wont be enough. We have to give as much as we can afford.
  9. Dolphin

    Dolphin Senior Member

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    Thanks very much for doing this (and thanks to others also). :Retro smile:

    Donations/contributions like this are like gifts to us all. :Retro smile:
  10. Dolphin

    Dolphin Senior Member

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    Generally I agree and am pleased to see somebody else is saying it.

    Although the US is one country where taxpayer dollars for specific illnesses can be very big (a much bigger part of the public health budget is spent on research there than in most countries).

    But certainly in other countries, because people are used to governments providing most/all of their healthcare, they can think it's the government's responsibility to pay for all of the research. But the total research budgets simply aren't big enough when you start dividing the money up between basic science research, non-illness specific research (e.g. different sorts of public health projects) and then divide the money amongst a few hundred major conditions and thousands of smaller ones.

    And in every country you need to have private money to keep researchers in the field.
  11. jspotila

    jspotila Senior Member

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    Thank you, Anika!!!!! I feel like every gift to the Association is a gift to me personally, because I need this research program to succeed for me and my family as well! Thank you!
  12. Lynn

    Lynn Senior Member

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    I woke up this morning wondering about this. Is the WPI involved in the tests for XMRV in these studies? I would hate to see these studies come out with results like the British studies. Since the XMRV test is just a part of each of these studies (added after th fact I would guess), wouldn't it make sense to use the test that already is able to find XMRV?

    Lynn
  13. Cort

    Cort Phoenix Rising Founder

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    Dr. Vernon has certainly emphasized the need for exact replication studies.

    I was shocked when she got that ovation. There were several awards; Annette Whittemore got a standing ovation - no surprise there - but the researchers jumped to their feet for Dr. Vernon. I was really surprised. She'd been on the job for a year or so - and was certainly not visible at the CDC (Dr. Reeves kept everyone under wraps) - but there they were on their feet applauding.

    Here's a piece on her at the Reno Conference.

    http://aboutmecfs.org/Conf/IACFS09Vernon.aspx
  14. jspotila

    jspotila Senior Member

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  15. jspotila

    jspotila Senior Member

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  16. Sasha

    Sasha Fine, thank you

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    I couldn't get it to play - my computer says "the file you are loading cannot be played by the default programme" and it only offers me the option to save it, not play it. Any idea if it is going up anywhere where you can just click a button and play it? I wish the CAA would provide such a thing - I can't be the only ME/CFS person with no computer skills to start with and no chance of fathoming this stuff out with half my brain AWOL. :confused::confused::confused:
  17. _Kim_

    _Kim_ Guest

    Sorry that it didn't work Sasha. Windows Media Player is one of the more common media players. The CAA did nothing wrong here.

    You first have to make sure you have Windows Media Player installed on your computer. If not, your computer has no idea how to read the file.

    If you've gotten that far and still are having problems, PM me and I'll try and troubleshoot it with you.
  18. CBS

    CBS Senior Member

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    Jennie,

    Thanks for letting us know.

    Sasha,

    The presentation is in a wmv file. Windows Media Player is the default. Real Player sometimes has difficulty with wmv files (I understand that version 10 was better than version 11). Quicktime can play wmv files using a converter such as: http://www.microsoft.com/windows/windowsmedia/player/wmcomponents.mspx
  19. George

    George Guest

    Sasha are you on a PC or a Mac?
  20. Sasha

    Sasha Fine, thank you

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    Thanks, Kim, CBS and George! I followed the link to the Windows Media Player download site that Kim provided but I don't know which option to download - I've got a PC with Vista but Vista doesn't seem to be among the options. Help! :confused:

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