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InvestinME Conference 2012 DVD discussion

Discussion in 'Latest ME/CFS Research' started by justy, Aug 8, 2012.

  1. justy

    justy Senior Member

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    Hi all, i just recieved my DVD of the conference a couple of days ago and have just started watching it. I thought it might be good to have a discussion thread for anyone who is watching it, or attended and has things to discuss. I'm a bit foggy at the moment, so wont say much thats intelligent.

    So far i have watched the first one and a half presentations from Bond university Australia. The first went way over my head, but the second is so far easier for me to engage with. The overall impression i had from these presentations and the first speaker journalist Jorgen Jelsted(sp?) is that things are really moving and heating up. The pre conference autoimmune working group sounds impressive, doctors and researchers - even outside the ME/CFS world- are starting to get involved and take the science seriously.
    Jorgen tells us in his pre conference speech that during an interview Wessley said no treatments 'in his lifetime' but i feel positive that we will see full recognition and some treatment within mine.

    All the best, Justy.
     
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  2. Enid

    Enid Senior Member

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    Well he has missed the point SW (et al) - treatment is one thing- UNDERSTANDING (beyond him) of the sheer biology being revealed another. Invest in ME the very best we have in the UK. bringing real science and real medicine - who cares about the pathetics of anything else - time to expose those super egos totally unconcerned with science.
     
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  3. justy

    justy Senior Member

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    Just watched the presentations by Fluge and Mella - so hopeful to see that the maintenance dose of rituximab is helping people to susatin their improvements. Still such a long way to go - they said they have spent 4 years trying to find autoimmune marker but still cant find one - they still cant work out how it is working or why.

    I loved it that they said it would have been unethical for them to have not looked inot it further - i wonder how many other doctors or researchers could say that!
    Fluge and Mella also talked about autoinflammation instead of autoimmunity but im not sure what they mean by this.

    Doctor Baruniuk's talk was also interesting - focusing on the brain. Each speaker seems to make such a compelling case for what they think and see is going on - but each theory seems to be slightly different! how is this going to work out in the end? We need a unified theory.

    All the best, Justy x
     
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  4. currer

    currer Senior Member

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    Can anyone who has a DVD, tell me - (remind me, - I was there!) what Dr Peterson was talking about?
    This is where the rumour that the Lipkin study would be published on June 30th came from.

    Has it been left in the DVD? It is part of Dr Peterson's talk.
     
  5. Bob

    Bob

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    Thanks for the interesting info, Justy, and for starting the thread.
     
  6. justy

    justy Senior Member

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    Hi Curer - sorry havent got to that bit yet. I promised myself i would watch it in order and watch them ALL (have already fallen down on the second promise - some i just cant get my head round)
     
  7. justy

    justy Senior Member

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    Autoinflammation - after a bit of googling i have gathered that autoimmune diseases originate from the acquired immune system, whereas autoinflammation (an emerging field of medicine) originates in the innate immune system. This is a good basic link which explains the difference. They explain that not much is known about autoinflammation, but list a some autoinflammation diseases - none of which appear much like M.E.

    http://www.niams.nih.gov/health_info/autoinflammatory/default.asp

    Just found this as well from an older thread:

    From: http://forums.phoenixrising.me/index.php?threads/mt-sinai-conference-rich-van-konynenburg.13325/

    I wonder if anyone can remember from this other Mt Sinai conference about Miriam Merad's work?
    And this from Miriam Merad at Mt Sinai - havent read it all yet:


    http://www.mssm.edu/static_files/MS...avel Funding/one-year-research-fellowship.pdf

    All the best, Justy.
     
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  8. justy

    justy Senior Member

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    Anyone know whats happened/happening with the above study at Mt Sinai? have tried searching for it but brains giving up now.
    Justy
     
  9. justy

    justy Senior Member

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    Hi Curer, watched Dr Peterson last night - he did a round up off current projects underway, as you may remember. He showed a slide which stated in large type that the XMRV multi - centre study was wrapped up and finished at the end of May and that the results would be published on the 30th June. He didnt say anymore about this but it was plain to see on the slide.

    Not many takers on this thread - anyone out there watching the DVD's?

    All the best, Justy.
     
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  10. CJB

    CJB Senior Member

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    I'm following along, Justy. I just read the report on the website and its all good stuff.
     
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  11. currer

    currer Senior Member

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    Thanks for doing that Justy. That is what I thought he said! I wonder why he was wrong?
     
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  12. Bob

    Bob

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    I haven't bought the DVD this year, because I didn't get around to watching last years', but I'm following the thread, and appreciate all your comments Justy.
     
  13. Andrew

    Andrew Senior Member

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    I've only completed 3 of them: Jørgen Jelstad, Olav Mella, and Øystein Fluge. Jelstad was a good way to start. No real science content. Mella and Fluge was pretty much an update. And they answered one question I had been concerned about, which is permanent damage that maintenance doses can cause to the immune system. They said there can be permanent damage, but so far no catastrophic damage. Also, regarding infections while b-cells are depleted. I see my oncologist next week, and maybe I'll ask him his experience with this.

    BTW, I doubt that any cancer doctors in the US would have done what Mella and Fluge did. I think they would have seen improvement in a CFS patient as interesting, and then put it out of their minds. IOW, no further research.
     
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  14. justy

    justy Senior Member

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    He did seem very certain.
     
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  15. currer

    currer Senior Member

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    It woz all VERY strange!
     
  16. justy

    justy Senior Member

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    Hey Andrew that was my thoughts about the attitude of Mella and Fluge exactly.

    I think someone asked them a question about the advisability of depleting B cells in a population that already has a lot of secondary and reactivated infections that they dont seem to be able to clear without intervention. My impression was that they didnt quite 'get' the question, then they answered that having an infection meant that you would be excluded from the trial - i wonder what implications this has for PWME.

    From a personal point of view - i have lung fibrosis and any chest/lung infection can be very serious - i am very susceptible to them and cant ever clear an infection without antibiotics. I imagine that this would rule me out - too dangerous perhaps?

    I was impressed by the maintenance dose talk - most that have had an improvement are now maintaining it - although serious relapses also seem quite common. My great hope is that this very important work will eventually throw up a safer drug, or even better, find out WHY the rituximab is working thus paving the way for newer and better treatments.

    I have some thoughts about the Swedish doctors talk on multidisciplinary teams, but at the moment i cant remember her name and too tired to go into it now, will try and talk about it tommorrow.

    All the best, Justy.
     
  17. alex3619

    alex3619 Senior Member

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    Rituximab depresses the immune system, you would not want to do it while a person was highly viremic. It would make the infection much more dangerous. Latent infections are something else - many hide in the B cells anyway, and so might be destroyed when the B cells die. Bye, Alex
     
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  18. garcia

    garcia Aristocrat Extraordinaire

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    I started watching it, but can't bring myself to watch the rest of it knowing there is nothing of relevance in there to those of us who just want to treat. It has to be the worst DVD/conference so far (previous ones have been much better IMHO).
     
  19. Bob

    Bob

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    From what I've read about it, I think it was a very optimistic and creative conference. It was exploring a new angle, and I think that was helpful, and more interesting than covering ground that's been covered already. There weren't any treatments on offer, but neither were there any at previous conferences. It's a research conference, so I guess it will only be interesting to people who enjoy following detailed research information.
     
  20. garcia

    garcia Aristocrat Extraordinaire

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    Actually that is my main complaint. There was nothing new there, where as at previous conferences I felt like I was being given something new. Even the stuff which was mildly interesting (Don Staines & Mario Delgardo) is actually old work of theirs (although it is new to this conference).

    Agree 100%.
     

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