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

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.
 
Sly Saint said:
do you have to log in to view?
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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.
 
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.
 
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MeSci said:
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 insuffiently close to the microphone, as other sounds, for example at the end, were louder.
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No. Sounds fine to me.
 
MeSci said:
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 insuffiently close to the microphone, as other sounds, for example at the end, were louder.
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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.
 
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)":
IOM Report said:
Diagnosis requires that the patient have the following three symptoms:
  1. A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities, that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest, and
  2. Post-exertional malaise,* and
  3. Unrefreshing sleep*
At least one of the two following manifestations is also required:
  1. Cognitive impairment* or
  2. Orthostatic intolerance
* Frequency and severity of symptoms should be assessed. The diagnosis of ME/CFS (SEID) should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity
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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.
 
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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.
 
Allele said:
Have you turned up the volume on the video panel as well as your computer?
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Yep. My hearing isn't first-class at the moment, but I can hear most things well enough. But this - no - a real struggle.
 
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 :)
 
Alvin said:
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 :)
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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.
 
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