Transcript of Solve ME/CFS webinar with Dr Unger, Sept 2016

[AndyPR]

Thanks for this. Would that be PBMCs, or peripheral blood mononuclear cells?

Potentially. Listening to it again I still can't be clear, it might be PBMCs or PDMCs, if anybody else wants to lend an ear it's just after 36:26 in the video, unfortunately it's not shown on the slide for that section.

Just noticed that @Simon is of the opinion that it's PBMCs so I'll change it to that, thanks guys.

 

[Dolphin]

Page 3
We made additions to the study through protocol amendments or new protocols and, through discussions with the clinicians and comments through sip sack(?)

I would guess this is CFSAC (the CFS advisory committee).

 

[AndyPR]

I would guess this is CFSAC (the CFS advisory committee).

Thanks, I'll change it.

 

[AndyPR]

I would guess this is CFSAC (the CFS advisory committee).

Hmm, seems like I can't edit it now, perhaps there is a time limit on being able to edit a post. Thanks for pointing it out though.

 

[dreampop]

Dr. Nahle
Yes, thank you, I'd like to move on to other questions, is ME/CFS tracked at all for prevalence in the U.S.?

Dr. Unger
There is not a systematic way to track it, we have added a question, an optional question, to some of the states that wanted to do it, basically just asking have you been diagnosed with ME/CFS by a physician, that is in the Behavioral Risk Factor Surveillance Survey and it would be just self-report.

Dr. Nahle
And is it the CDC in charge of tracking disease, demographics about diseases in the United States and perhaps in the world?

Dr. Unger
Well, yes I guess, I guess we are.

I wanted to point out this is a very important subject and well debated by Nahle - it's a lovely bait into the follow up question. I don't know if the CDC tracks all other diseases, but its very easy for a disease - or syndrome - to get lost in the cracks if it isn't consistently tracked. I wonder if the CDC tracks other syndromes or diseases that require a subjective diagnosis.

 

[me/cfs 27931]

I wonder if the CDC tracks other syndromes or diseases that require a subjective diagnosis.

The CDC appears to consider tracking Alzheimer's a priority (which it should). I wonder if the cognitive aspects of ME/CFS (e.g. slowed processing speed, functional impairment, memory issues, visual processing issues) could also be tracked through this existing program.

http://www.cdc.gov/aging/pdf/2013-healthy-brain-initiative.pdf

Increased Ability to Track the Public Health Burden of Cognitive Decline
A priority action from The Healthy Brain Initiative:

A National Public Health Road Map to Maintaining Cognitive Health (2007) called for tracking the public health burden of cognitive decline through existing surveillance systems.Today, thanks to partnerships at
the state and national levels, a cognitive impairment optional module is now part of the Behavioral Risk Factor Surveillance System The module provides states and territories with the ability to collect state-speci c data on self-reported cognitive decline. To date, 45 states plus the District of Columbia and Puerto Rico have included the questions in their BRFSS surveys during 2011–2013.

The Alzheimer’s Association and CDC convened a diverse panel of experts to help inform the content and design of the module, which includes 10 questions that seek information about self-reported cognitive decline and burden. Through partnerships with the state health departments’ BRFSS Programs, the Alzheimer’s Association’s local chapters, and the aging services network, the module was disseminated and supported by numerous states.

Current efforts focus on disseminating the data through various channels, such as state data briefs, manuscripts, interactive Web sites, brie ngs, and presentations. With this information, state planners and decision-makers can examine the burden of cognitive decline in their states and gain insights about current and future needs.