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5th Invest in ME/CFS Conference - Programme May 24 2010

Discussion in 'XMRV Research and Replication Studies' started by shrewsbury, May 23, 2010.

  1. shrewsbury

    shrewsbury member

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    I'm thrilled (and jealous) that so many are able to make it, and hope to be able to report back to us here in internet land.

    I had tried to get webcasts, some kind of live coverage, or posting to the internet soon after. Invest in ME decided that they couldn't afford to do it + they were concerned about the technology as we corresponded at a time when a few MECFS webcast failed.

    I still wish they would reconsider and become more current in their thinking. While I recognize the need to fundraise, in this case selling a DVD of the conference, I think restricting recordings, and not putting anything on the web after the conference themselves is not the best strategy. Just think what it would do for the MECFS community and world awareness of the state of the science of MECFS if they put this all on the web! And maybe asking for donations with the webcast would bring in as much or more than the sale of the DVDs.
  2. jackie

    jackie Senior Member

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    I would give anything to be there....just to hear my doc speak his "science talk" to a room full of people who can really comprehend what he's saying! (as opposed to telling me...as try as I might - I'm not quite up to speed....yet!)

    I wish I could be there in person to tell the audience how much his compassion, perseverence and methods of treatment have helped me improve...to the point that I can read and write on these forums - changing my life for the better!

    In over ten years he has never wavered in his dogged determination to help those of us with me/cfs. Every symptom (no matter how small or insignificant) is a "clue" to the bigger picture for him!..and I trust him so much, that I am a willing "guinea pig" for any research he wants to do. Unconditionally.

    I am indebted to him...for trying so hard to put an end to our suffering (and so lucky to be his patient!)

    He will be in his element and I wish him success! (and all the others who make it there)

    He's Dr. John Chia



    jackie:D

    (If there was an award for "Most Improved Player of The Year" with me/cfs...I should be in the running - thanks to him! So my grateful family and I will be cheering him on....here in the U.S.)
  3. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    those of you going are so lucky, i'm jealous, but in a good way. It's wicked awesome having people I can actually communicate with being in that room! Good luck
  4. fds66

    fds66 Senior Member

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    I hope you all enjoy the conference tomorrow. I have put my name down for a DVD already and I can't wait for it to arrive.
  5. Woody

    Woody

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    Shrewsbury

    :Sign Good Job:
    Shrew,
    You've got some great ideas. It would be great for them to do a webcast, or capture the meeting on video and sell the DVD's. This should cover their costs and would be great PR to the ME/CFS world. I think they would feel some kind of public pressure, and refusing would cause some to question why, especially in the press. I'm not suggesting any kind of wrongdoing, but we do live in the information age, and even denying us could raise our concerns to the world.

    Special paragragh, just for you, I wanted to thank you for your tireless (ha, is that a word in ME/CFS vocab?) efforts of finding the latest news and posting it for the benefit of all. I saw the 2 threads you posted yesterday, and they are growing already, prior to the meetings. I was able to read the 1st few posts last night, and all I can say is great job of keeping us informed! So here's to you girl..clink...:Sign Good Job:
  6. Bob

    Bob

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    Hi Woody,

    I believe that Invest in ME is a tiny organisation... I've heard that it has just three people running it, completely voluntarily, in their spare time (I think they are parents of people with ME)...

    It's amazing that they've put together such a high profile conference by themselves, without any government funding...

    So I don't think that we can really demand all sorts of hi-tech, hi-cost, webcasting etc...

    But they will be selling a DVD of the entire conference... (I posted a link earlier in this thread, if you are interested in buying the DVD).

    They also sell DVD's of all their previous years' conferences if anyone is interested... and all the conferences DVD's are really interesting...
    (It's really rewarding to watch all the conferences - they are megga-educational - and they have the best scientists giving talks - but they're quite hard-going to watch as most of the presentations are pretty technical and scientific)...

    Bob

  7. shrewsbury

    shrewsbury member

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    Hi Bob,

    My comments were not meant to detract from this fantastic conference in any way.

    I just feel that finding a way to get the info out on the net would be of huge benefit to the ME\CFS population, would inform large numbers of the general public, media and medical profession, and would probably lead to more funding for Invest in ME.

    Since the AHMF funded the DVD for this year, there are going to be videos of each talk made to go into the DVD. Maybe we could find a computer person to volunteer to set up the videos on their site and attach a donate button to each video. Don't know if it's possible to do one that travels with the video when people post it on other sites, but would imagine it is.

    Maybe I'll try corresponding with them again after the conference and run this idea by them. In the meantime, any computer people have useful input or urges to volunteer?

    And Woody, thanks for the thanks!:Retro smile:
  8. Bob

    Bob

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    Hi Shrewsbury...

    Sorry, i didn't mean to post a negative sounding comment...
    I agree with your comments...
    I have seen a video website where you can set up pay-per-view videos... and 'donate'-per-view videos...
    I think it's a great idea to ask them if they need any help with setting something like that up.

    Bob



  9. shrewsbury

    shrewsbury member

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  10. Sasha

    Sasha Fine, thank you

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    The suspense is killing me... 2pm in the UK now... dying for an update...
  11. Alexia

    Alexia Senior Member

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    me too Sasha.. we have some hours to wait still.
  12. Sasha

    Sasha Fine, thank you

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    I had a little hope at the back of my mind that some WAP-enabled technophile would message us from the lunchbreak but guess not...

    Incidentally, anyone who went to the conference and is reading this, we all know you'll be wiped out afterwards - don't let our thirst for knowledge lead you to post before you've had a good rest! :cool:
  13. bullybeef

    bullybeef Senior Member

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    North West, England, UK
  14. fds66

    fds66 Senior Member

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    I've been thinking of them all day. I hope they all made it OK and are enjoying their educational day.
  15. sproggle

    sproggle Jan

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    There are plans to open a WPI like centre based at the uni of east anglia!!! IiME is helping to fund &Ian Gibson is involved -all at very early stages.

  16. Knackered

    Knackered Guest

    Wow, because of the XMRV findings?
  17. sproggle

    sproggle Jan

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    :balloons::balloons::balloons::balloons::balloons::balloons:

    Wanted to post celebrations ballons with that message but was just too eager to let ya all know first!! I'm moving to East Anglia lol!!! :victory::victory::victory:


    Some not so good news is that Annette is too unwell to give her prepared presentation. Think she has exhaustion from all her travels &hard work.

    Jan xxx
  18. Kati

    Kati Patient in training

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    Oh dear, so sorry to hear about Annette. She definitly needs to rest and take care of herself... :(
  19. Knackered

    Knackered Guest

    The suspense is killing me! Is is based on the XMRV stuff with real biomedical research?
  20. sproggle

    sproggle Jan

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    Sorry that is all the info i have!! ....but in my opinion must be if it's being dubbed "a WPI like centre" so XMRV should be included &other biomedical research too.

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