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

Video from University of Tasmania of lecture held by David Tuller April 4, 2018

Chronic Fatigue Syndrome (aka ME) - Challenging the accepted dogma through research journalism

Duration: 1 hour

 

Works for me too, but it took a little while to download and was ready to start.

 

Wow that is an excellent lecture @dave30th as always

Truly excellent. Thank you

 

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.

 

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.

 

My (brief) thoughts on the talk are here: https://www.s4me.info/posts/59593/

 

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.

 

No. Sounds fine to me.

 

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.

 

Have you turned up the volume on the video panel as well as your computer?

 

Try rebooting it? I got nothing audible the first two times and then it worked.

 

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:



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".



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.

 

Yep. My hearing isn't first-class at the moment, but I can hear most things well enough. But this - no - a real struggle.

 

Hrm. Mine's quite loud. The vaguaries of the interwebz!

 

Yes, and strangely Jan and I only live about 3 miles apart. Weird...

 

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

 

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.