Emerge Australia ME/CFS International Research Symposium March 12-15, 2019

kendonoghue

Ken Donoghue
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Thanks @Ben H for posting a link to the detailed "Agenda!" Impressive!

@Diwi9 posted this helpful information on another thread:

Found this time zone converter online: https://www.timeanddate.com/worldclock/converter.html
I was using that same site; this past weekend, and kept getting the conflicting hours. Daylight savings time kicked in between Sat and Sun; as if I needed another wrench to screw up trying to watch a CFS symposium on the other side of the planet while having CFS.
 

Gemini

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I was using that same site; this past weekend, and kept getting the conflicting hours. Daylight savings time kicked in between Sat and Sun; as if I needed another wrench to screw up trying to watch a CFS symposium on the other side of the planet while having CFS.
Sorry @kendonoghue was confusing for me too.

I'm in the NYC area US and tuned in to the livestream start of Symposium's Day 1 March 13 at 5:30 pm last night March 12th in this Time Zone thanks to @Cort. Will do the same tonight for Day 2. Hope that helps.
 

Sing

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I want to find out more about the area of work that Dr. Leighton Barnden presented upon. He showed that there is impaired connectivity between the medulla in the brainstem and the mid brain.

The slowed and impaired processing here is what I feel has been my greatest stumbling block with ME/CFS. Here is “the drag”! When I first fell into this condition, instead of having a nimble brain which had worked without my even trying, I felt that thinking was now like trudging uphill in the snow in heavy boots. I now had to work for it, and it had become slow and tiring. While over time I have developed compensatory strategies, medications and so forth, the contest is still on between what I want my brain to do, and this impeding drag.

Hooray for Dr. Barnden putting his finger right on the problem!
 

Diwi9

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I liked his suggestion that oxygen might ‘spring the trap’
(Eg. Hyperbaric chambers)
I have a mHBOT...but there is some thought that home versions don't dive deep enough. Deep dives have other inherent dangers. I still do mine a couple times per week for 75 minutes. I normally feel better after a dive...of course, I've also been lying down for 75 minutes while in it.
 

Richard7

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It seems a shame that Ruud Raijmakers seems to be impressed by CBT's ability to reducing patients complaints about fatigue.

The point being, for anyone new here, that a psychological therapy designed to convince people to reframe their descriptions of their experiences needs to be tested against something other than how they describe their experiences. It needs to be tested against an objective measure of fatigue.
 

Sing

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It seems a shame that Ruud Raijmakers seems to be impressed by CBT's ability to reducing patients complaints about fatigue.

The point being, for anyone new here, that a psychological therapy designed to convince people to reframe their descriptions of their experiences needs to be tested against something other than how they describe their experiences. It needs to be tested against an objective measure of fatigue.

Agreed! Learning better to see the glass half full may be helpful to anyone, but does it actually change a person’s physical condition? Not much, if at all, most likely, and there is also a potential for harm, in that downplaying negative feedback from the body and accentuating positive or neutral reframing encourages people with our sort of condition to overdo it and crash.

Tired of this whole subject!
 

Diwi9

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My guess is that his funding may be somewhat dependent on certain study questions. So far the Dutch have been very pro-BPS. I think the audience of well-versed scientific researchers handled him well. General CBT can help in lots of conditions to provide coping skills. There is nothing *special* about ME/CFS in this respect. And no....psychology is not perpetuating symptoms, Ruud...but symptoms may be perpetuating our psychological state.
 
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Summary of Robert Phair's talk: View attachment 31855
This leaves out the unfortunate news that Dr Phair wasn’t able to confirm his findings, from September, in more people. Although he says it’s still possible the IDO trap is real, it does seem a bit more unlikely.

He said he thinks the measurement errors could explain the recent poor findings and will re-test on a much more accurate mass spec within 3 months time.
 

Gemini

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This leaves out the unfortunate news that Dr Phair wasn’t able to confirm his findings, from September, in more people. Although he says it’s still possible the IDO trap is real, it does seem a bit more unlikely.
@Cam Newton I think I heard him say when he tested some patients other than the original ones from California who were positive for the IDO trap he found a second possible trap in those in an area somewhat related to IDO.

Hope conference organizers make the presentations available to re-watch, so much really good information.