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ME/CFS International Research Symposium, March 2019, Australia

Discussion in 'ME/CFS research news' started by Simone, Nov 26, 2018.

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  1. Sasha

    Sasha Senior Member (Voting Rights)

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    Thanks, Simone!

    To make it run for three days, you have to just do it again twice, for each of the other two days (not a very efficient system!). :)
     
    Sasha, Mar 11, 2019
    #21
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  2. Simone

    Simone Senior Member (Voting Rights)

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    Ah, that makes sense. Thanks, @Andy!
     
    Simone, Mar 11, 2019
    #22
    MEMarge and Andy like this.
  3. Simone

    Simone Senior Member (Voting Rights)

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    Thanks, @Sasha! Good to know for next time!
     
    Simone, Mar 11, 2019
    #23
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  4. rvallee

    rvallee Senior Member (Voting Rights)

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    rvallee, Mar 11, 2019
    #24
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  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Last edited: Mar 12, 2019
    Sly Saint, Mar 11, 2019
    #25
    MyalgicE, lafarfelue, Hutan and 7 others like this.
  6. Sasha

    Sasha Senior Member (Voting Rights)

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    So Day 1 of the conference happened while I was asleep. Did anybody watch the livestream? Anything exciting?

    Do we know if they're going to post it on YouTube later?
     
    Sasha, Mar 12, 2019
    #26
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  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Sly Saint, Mar 12, 2019
    #27
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  8. Simone

    Simone Senior Member (Voting Rights)

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    No, the first day is just starting now. Just watching the first presentation now.

    Any presentations which aren’t embargoed will be made available on Emerge’s Vimeo channel after the conference.

    Presentations with embargoed results (which won’t be live-streamed) today: Dr Cara Tomas, and parts of Prof Paul Fisher and Dr Elisha Josev.
     
    Last edited: Mar 13, 2019
    Simone, Mar 12, 2019
    #28
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  9. Forbin

    Forbin Senior Member (Voting Rights)

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    I'm guessing that the talk by Dr. Cara Tomas was embargoed, since the feed went to "We'll Be Back Soon" just as she was being introduced - unless it's just me.

    ETA: Now it says "We are sorry that this presentation cannot be shared" - so, yes, embargoed.
     
    Last edited: Mar 12, 2019
    Forbin, Mar 12, 2019
    #29
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  10. fossil

    fossil Senior Member (Voting Rights)

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    fossil, Mar 13, 2019
    #30
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  11. oldtimer

    oldtimer Senior Member (Voting Rights)

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    I just wrote a whole spluttering screed about this rubbish article but what's the point. :banghead: says it all!

    @rvallee I hope we get to find out why Robert Naviaux will be attending this conference. Strange.
     
    oldtimer, Mar 13, 2019
    #31
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  12. Hutan

    Hutan Moderator Staff Member

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    Good job done by Heidi and Paul, very clear and got all the key messages out.

    Fantastic to hear that Emerge has funding for a Telehealth nurse now.
     
    Hutan, Mar 13, 2019
    #32
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  13. Estherbot

    Estherbot Senior Member (Voting Rights)

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    Are there any talks worth watching so far?

    Links, place in video etc?
     
    Estherbot, Mar 13, 2019
    #33
  14. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    If you check out Cort Johnson (Health Rising) his highlights are "loved the Craddock one (most ununderstandable – but impressive) and the Barnden – love what he’s doing with the brainstem".‏ I could only watch the Barnden talk; seems like he's moved the whole MRI thing on significantly. The reason I couldn't watch the Craddock talk was (I guess) that Facebook only hosts video up to 4 hours long so the Craddock talk wasn't available. If you hurry then you'll get the Barnden talk - I guess it will be available until the next session starts (9.30pm UK time I guess). Hopefully all of the talks will be available after the Conference.
     
    FMMM1, Mar 13, 2019
    #34
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  15. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    Check out the Barnden talk on MRI/Brain Stem. Only stuff I could view from the Conference presentations was strictly medical imaging (MRI etc.) no c--p about "multifactorial pathologic entity with lifestyle and constitutional/psychological makeup contributing factors" - whatever that means. Haven't checked the link you provided to see this other stuff - how does it relate to the Conference?
     
    FMMM1, Mar 13, 2019
    #35
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  16. Roy S

    Roy S Senior Member (Voting Rights)

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    Roy S, Mar 14, 2019
    #36
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  17. fossil

    fossil Senior Member (Voting Rights)

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    The link is to an organisation that is holding the MINDD International Forum. Someone mentioned it earlier in the thread because Naviaux is going to it, not the Emerge conference.
     
    fossil, Mar 14, 2019
    #37
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  18. Hutan

    Hutan Moderator Staff Member

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    https://goliveaustralia.com.au/emerge2019/

    If you click on 'Event posts', there are the two days of talks there, able to be viewed. The start of the first day is about 13 minutes in - it shows the waiting screen until then. Edit- first talk, from the Minister of Health starts at 17 minutes.

    I haven't been able to watch many talks yet. The streaming set up is very good. Great sound and we can see the slides and the speaker throughout.

    The Barnden talk about the brainstem was good - I got the feeling that he is a man who knows what he is doing.
     
    Last edited: Mar 14, 2019
    Hutan, Mar 14, 2019
    #38
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  19. Hutan

    Hutan Moderator Staff Member

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    Yes, the Ruud Ruijmakers talk on Q-fever fatigue syndrome didn't disappoint. He is actually a good clear speaker. So we could see his unfortunate reasoning about the efficacy of CBT very clearly. I took a screen shot of the slide showing how CBT works in Q-fever fatigue syndrome.

    Screen Shot 2019-03-14 at 2.16.02 PM.png

    After telling us that CBT is a proven therapy for CFS, he told us about their investigation of CBT for QFS. He is happy that CBT was a success (as measured at EOT). He does not know why the effect of CBT wears off so that, by followup, the CBT treated group has marginally worse fatigue than those with the placebo treatment. They are working hard to tweak the CBT so that it will last longer. :banghead:

    He mentioned that the impact of CBT in CFS (70% success rate :rofl:) seems to wear off after 2 years but that it wears off much more quickly in QFS patients. Sadly no one in the audience explained the transient impact of CBT on questionnaire answering to Ruud. Perhaps we should send him a copy of Graham's video.

    He did go on to talk about some interesting biomedical results, so, all in all, I think it's a talk worth watching.

    The questions at the end are worth a listen too. There was an Australian (a doctor?) who, when the question of whether CFS and QFS are the same came up noted that it's definitely a different disease. 'The people who get QFS are hardworking farmers, nothing like the sort of people who get classic CFS...'

    Also in the question time was the mention of an Adelaide professor, Marmion?, now deceased. He seemed to have been well regarded. He apparently found evidence of the Q fever bacteria (perhaps whole bacteria, perhaps polysaccharide debris) in the bone marrow of QFS patients and hypothesised that this was the cause of the ongoing symptoms.
     
    Last edited: Mar 15, 2019
    Hutan, Mar 14, 2019
    #39
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  20. Forbin

    Forbin Senior Member (Voting Rights)

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    I think I saw most of Dr. Davis speech at the start of the second day. I lost the feed when he started to recap about the nano-needle and I couldn't get back.

    The news that was unknown to me (at least) was that the T-cell clonal expansion that had been seen in 4 ME patients turned out to also be showing up in controls at more or less the same frequency. I think they compared 12 patients with 12 controls, or something close to that.

    He also talked about tests for DNA viruses, which so far have not found anything significant. They plan to test for RNA viruses next (unless I mixed up DNA and RNA).

    They do see a suppression of anelloviruses in ME patients. These viruses are ubiquitous in humans, but they are more active when the immune system is weakened. Their suppression in ME patients may indicate that a more active immune system is holding them down.

    Near the start of his presentation, Dr. Davis spoke forcefully about exercise recommendations.

    I was taken by the irony when he pointed that worsening from exercise is a prime diagnostic criterion of ME, yet exercise is still being prescribed (by some) as a treatment.

    There was more, but unfortunately I didn't take notes (except for the quote) because I thought I could go back over it.
     
    Last edited: Mar 14, 2019
    Forbin, Mar 14, 2019
    #40
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