28 Nov 2017 | Telebriefing - updates on NIH attempts to advance ME/CFS research - TRANSCRIPT/RECORDING NOW AVAILABLE

Code:

https://twitter.com/TomKindlon/status/935621452400877568

https://twitter.com/user/status/935621452400877568

 

It is so disheartening listening to NIH...they never leave us with much hope. The rate of progress on the intramural study is also terribly slow. They just piss me off. Sorry, no other way of putting it.

 

This is not a cheering point... but some slow genuine progress would be better than most of what we've had over the last few decades!

 

From: Cort Johnson

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Note to self: Must learn more about Dr. Unutmaz and his research...

 

We've been in initial contact with him and he sounded keen to interact with us, but further conversation is needed to actually arrange anything. We are waiting for his team to get back to us now.

 

Interesting (my bolding):

CDEs do what they do by establishing standardized ways to characterize a disease. The 2011 CDE established for multiple sclerosis, for instance, is a massive set of documents containing over 100 recommended data elements which describe everything from how to provide a diagnosis, to how to assess cognitive functioning, to how to do brain scans.

A set of core CDEs, which present essential information that should be present in each study, and supplemental CDEs are provided. A rationale and grade are provided for each CDE. For instance, the multiple sclerosis CDE states that the Berg Balance Scale is a supplemental, but “recommended”, test in MS.

The Common Data Element Working Group for ME/CFS has eleven specialized subgroups/panels covering data elements associated with fatigue, sleep, post-exertional malaise (PEM), autonomic testing, imaging, neuroendocrine test and biomakers and others. [...]

The project began in January of this year. The first round of ME/CFS CDEs will be published this month for public comment with the final publication, if my notes are right, early next year.​

 

Also interesting: "Unutmaz is also working with Precisely to develop an app to collect clinical data worldwide on ME/CFS patients. We’ve heard of projects like this before, but this may be the first one that has the funding to come to fruition."

I think we've all wanted to contribute to research as much as possible - I wonder if this will be a chance.

 

Nailling this down is perhaps the greatest challenge, and the most important area for patient input, in my view. I think there is much to do here.

Personally, I’d like to see fatigability considered alongside fatigue: Often it’s not just the fatigue level itself, but the speed with which fatigue happens compared with healthy people.

 

Spot on - this is a crucial difference between ME and 'chronic fatigue', IMO.

 

Does anyone know if the NIH are planning to post a recording of the call? I'd love to hear what was said.

 

@Sasha -yes, they said the recording and transcript would be posted. (I had understood they were to be posted last week but they haven't been yet.... I plan to email and ask about it in a few minutes. Will let you know if I hear back.)

EDIT to add: (I heard back quite quickly - that's always nice) It seems the transcript should be posted soon. The recording wasn't mentioned.

 

I have checked several times today and the transcript is not yet available.

 

And here's the link (at last)
NIH telebriefing transcript/recording

 

Thanks, Denise - I've updated the thread title accordingly.

 

Here's the YouTube video (no visuals, I expect!).

https://www.youtube.com/watch?v=EqhiqLwe6ME

 

Just listening to this. Derya Unumatz says he's planning a blog and a YouTube channel so that patients can keep up with what he's doing - he says he's passionate about patient outreach, and indeed his Twitter feed is very good: https://twitter.com/Derya_