1. The 'News In Brief' post for w/c 8th October is now available Guest, click here.
    Dismiss Notice

David Tuller lecture: CFS (aka ME) - Challenging the accepted dogma through research journalism

Discussion in 'General ME/CFS News' started by Kalliope, Apr 7, 2018.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    1,085
    Likes Received:
    12,630
    Location:
    Norway
    oldtimer, Jan, Webdog and 26 others like this.
  2. Trish

    Trish Moderator Staff Member

    Messages:
    6,945
    Likes Received:
    41,288
    Location:
    UK
    Works for me.
     
    Webdog and Melanie like this.
  3. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    1,085
    Likes Received:
    12,630
    Location:
    Norway
    Works for me too, but it took a little while to download and was ready to start.
     
    Melanie likes this.
  4. JemPD

    JemPD Senior Member (Voting Rights)

    Messages:
    265
    Likes Received:
    2,364
    Wow that is an excellent lecture @dave30th as always

    Truly excellent. Thank you
     
    Jan, Webdog, sea and 6 others like this.
  5. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    1,085
    Likes Received:
    12,630
    Location:
    Norway
    Have watched it throughout the day with breaks. Great lecture which includes a lot of history and important context to the ME-debate. Would be a perfect opening lecture of ME-conferences in countries where the biopsychosocio GET/CBT-regime still rules.
     
    Jan, sea, Starlight and 6 others like this.
  6. Allele

    Allele Senior Member (Voting Rights)

    Messages:
    1,047
    Likes Received:
    9,121
    He summarises with such clarity and precision. I cannot do this at all, it's too much info to distill, remember and communicate, yet he delivers such a clear and comprehensive message. Can't wait until this is transcribed for required reading in med school!

    SO grateful to you, @dave30th, so so grateful.
     
    Jan, Webdog, sea and 6 others like this.
  7. BruceInOz

    BruceInOz Senior Member (Voting Rights)

    Messages:
    195
    Likes Received:
    1,320
    Location:
    Tasmania
    WillowJ, Allele, MeSci and 2 others like this.
  8. Trish

    Trish Moderator Staff Member

    Messages:
    6,945
    Likes Received:
    41,288
    Location:
    UK
    Nope, I just clicked on the link in the opening post. It took about a minute to think about it, then a black page appeared with a start triangle in the middle. Clicked on that, it hesitated for another half a minute, then the lovely David Tuller started talking to me. It's audio with slides.
     
    MEMarge likes this.
  9. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    1,052
    Likes Received:
    6,698
    Location:
    Cornwall, UK
    Am I the only one to have difficulty hearing this? I just about managed by plugging in my speakers and playing the tape with them quite close, but it was damned awkward! It seemed to be the speaker (Dave) who was speaking too quietly or insufficiently close to the microphone, as other sounds, for example at the end, were louder.
     
    Last edited: Apr 8, 2018
    Jan likes this.
  10. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    3,330
    Likes Received:
    19,931
    No. Sounds fine to me.
     
  11. Jan

    Jan Senior Member (Voting Rights)

    Messages:
    401
    Likes Received:
    2,938
    No, I'm having problems too, volume is up to max and I'm still straining to hear with my ear next to my laptop.
     
    MeSci likes this.
  12. Allele

    Allele Senior Member (Voting Rights)

    Messages:
    1,047
    Likes Received:
    9,121
    Have you turned up the volume on the video panel as well as your computer?
     
    Jan likes this.
  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    2,426
    Likes Received:
    26,375
    Try rebooting it? I got nothing audible the first two times and then it worked.
     
    Jan likes this.
  14. Webdog

    Webdog Senior Member (Voting Rights)

    Messages:
    1,228
    Likes Received:
    7,909
    Location:
    California
    Great presentation @dave30th!

    One comment about the IOM criteria. Specifically, summarizing diagnostic Symptom #1 as "fatigue".

    While it's true that Symptom #1 does require fatigue, I would argue that the word "fatigue" is not sufficient.

    From the presentation slide:

    2015IOM.png

    And this is the 2015 IOM proposed "Diagnostic Criteria for ME/CFS (SEID)":
    So, is Symptom #1 correctly described as "fatigue"? After all, it does mention fatigue.

    In their diagnostic flowchart (below), in place of Symptom #1, the IOM confusingly splits Symptom #1 into 3 pieces: Fatigue/Function/Duration.

    Patients must first present with "Profound fatigue", then a "Substantial decrease in function" that "Persists >= 6 months".

    IOMflowchart.png

    In summary, in place of "fatigue", I would suggest instead one of the following phrases:
    • "Substantial decrease in function accompanied by fatigue"
    • "Substantial decrease in function accompanied by profound fatigue"
    • "Substantial decrease in function persisting 6 months or more, accompanied by fatigue"
    PS: Tuller's presentation was fantastic. I just wanted to address the IOM symptom #1 being summarized as only "fatigue", which is something I've heard from many different sources.

    Personally, I feel the IOM erred by combining "decrease in function" and "fatigue" into one symptom. These 2 should have been separated in the diagnostic criteria, just as was done in the flowchart.
     
    Last edited: Apr 8, 2018
  15. Trish

    Trish Moderator Staff Member

    Messages:
    6,945
    Likes Received:
    41,288
    Location:
    UK
    Once I turned the sound up to max on my laptop the sound was fine. I've just got around to listening to the whole lecture. Truly excellent, thank you @dave30th.
     
  16. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    1,052
    Likes Received:
    6,698
    Location:
    Cornwall, UK
    Yep. My hearing isn't first-class at the moment, but I can hear most things well enough. But this - no - a real struggle.
     
  17. Allele

    Allele Senior Member (Voting Rights)

    Messages:
    1,047
    Likes Received:
    9,121
    Hrm. Mine's quite loud. The vaguaries of the interwebz!
     
    MeSci likes this.
  18. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    1,052
    Likes Received:
    6,698
    Location:
    Cornwall, UK
    Yes, and strangely Jan and I only live about 3 miles apart. Weird...
     
  19. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    2,241
    Likes Received:
    11,190
    Well done, i liked the ending where he explained that there is no other treatment option because these loons tied up money which prevented better research that might have given us better treatment by now.
    In fact i would recommend this speech for anyone who wants to know about the CBT/GET "controversy"

    The only thing is i wish it had video of the participants, the powerpoint was great but i wish it was intercut with David on camera. A minor thing which has nothing to do with the content, but i like seeing people in presentations :)
     
    Invisible Woman likes this.
  20. BruceInOz

    BruceInOz Senior Member (Voting Rights)

    Messages:
    195
    Likes Received:
    1,320
    Location:
    Tasmania
    The presentation was in a lecture room at the University of Tasmania. They have a virtually automated recording system set up to make it easy for lectures to be watched later by students who may even be at different campuses. (My son attends UTas and I know they do it this way in other disciplines.) I assume this is how the recording was made. There was noone present who appeared to be fussing around with any recording equipment.
     
    Trish and Invisible Woman like this.

Share This Page