CDC ME/CFS Grand Rounds webcast live Feb 16 - NIH nervous system infections "big wheel" speaking"?

[halcyon]

Watch and listen carefully. (CFSAC October 2012 meeting)

The best part is how the camera captured the look on the woman's face in the background when Unger said that.

Circle, where have I seen that before..oh yeah.

 

[geraldt52]

The best part is how the camera captured the look on the woman's face in the background when Unger said that...

That is absolutely priceless! Good thing she didn't have something she could throw...or actually, I wish she had had something she could have thrown. Straus, Reeves, Unger...what's the difference? I've come to wish that the CDC budget had been cut to zero, just so we could stop having to listen to their drivel...$5M a year...for what?

 

[Old Bones]

@ Nielk Thanks for posting this short video clip. With respect to the mind/body connection, I've decided to put my own experienced patient's interpretation on Doctor Unger's statement. For those who haven't viewed the video, here's a portion of what she said: "Our society does not do a good job of understanding there is a mind/body connection, and when you start understanding how people respond to their illness and how it affects them, it is a circle".

Here's my take. Before becoming ill with my precipitating viral infection, I perceived myself as an exceptionally fit and healthy person. It was beyond my capacity to imagine that I would not recover from a viral infection. I always had in the past. Therefore, my lasting fatigue and increasing symptoms must have been due to a period of time that was unusually demanding, even for me. Since I knew this time period would come to an end, there was no reason to slow down. The problem would resolve on its own. When it didn't, I followed a typical "when the going gets tough, the tough get going" strategy, and tried even harder. Of course, that only made things worse. So yes, according to Doctor Unger's mind/body model, how I responded to my illness (denial) did affect me (I became much worse). And, even after years (decades), I still rarely acknowledge how impaired I am. The slightest improvement, however brief, results in my doing more, which makes me worse, so I do less. Until the next time. Yes, it is a never-ending circle. So, Doctor Unger is correct, again -- but probably not in the way she thinks she is.

 

[Snowdrop]

It's just so easy for robustly healthy people to 'figure it all out' for us. Their explanations make so much sense (to them) except they lack any kind of context or reference point to understand that all those sick people don't fit into their perfect little diagram. They know so much more than is possible given that there is no good research to support anything they say.

And they lack our personal experience of ME. They turn everyone of us into people who are clueless about our own experience and unknowing about our own mental state or own mind hoodwinking us into false beliefs. ALL of us. So many it must be viewed as huge mass delusion.

Occam's razor--the most likely/simplest senario is that they are wrong.

 

[taniaaust1]

What amazes me is how they an take something which does have some kind of cycle to it eg you do more and get sicker so you are pushing yourself harder to do what you must do and that triggers ont into get even sicker etc. and they completely change the cycle to be a different one where patients are causing their symptoms through activity avoidance

Its doesn't occur to them that these patients are in fact pushing themselves harder and harder with more severe consequences of doing so. phew to activity avoidance. Ive put myself into hospital and needed a drip on many occasions when ive OVER DONE things. I'd like these ones to explain how their activity avoidance fits me.

If they started listening to ME patients, maybe they would come to understand this illness, instead of standing on sidelines and making assumption after assumption. Some group is deluded and I know which it is.

 

[taniaaust1]

Watch and listen carefully. (CFSAC October 2012 meeting) posted by patient advocate Khalyal

oh LOL.. that's certainly a must watch thing for the emotional responses of the man and lady watching her talk. He pulls back and puts his hand over his mouth (is that a reaction to distance himself over what she's saying) and the lady next to her rolls her eyes... I wish they could of had the camera on more people at that time.

It completely shocks me to see that the CDC hasn't moved forward one bit in 20 years with this..

 

[Nielk]

https://www.facebook.com/874568469298728/videos/926504564105118/

 

[eastcoast12]

@ Nielk Thanks for posting this short video clip. With respect to the mind/body connection, I've decided to put my own experienced patient's interpretation on Doctor Unger's statement. For those who haven't viewed the video, here's a portion of what she said: "Our society does not do a good job of understanding there is a mind/body connection, and when you start understanding how people respond to their illness and how it affects them, it is a circle".

Here's my take. Before becoming ill with my precipitating viral infection, I perceived myself as an exceptionally fit and healthy person. It was beyond my capacity to imagine that I would not recover from a viral infection. I always had in the past. Therefore, my lasting fatigue and increasing symptoms must have been due to a period of time that was unusually demanding, even for me. Since I knew this time period would come to an end, there was no reason to slow down. The problem would resolve on its own. When it didn't, I followed a typical "when the going gets tough, the tough get going" strategy, and tried even harder. Of course, that only made things worse. So yes, according to Doctor Unger's mind/body model, how I responded to my illness (denial) did affect me (I became much worse). And, even after years (decades), I still rarely acknowledge how impaired I am. The slightest improvement, however brief, results in my doing more, which makes me worse, so I do less. Until the next time. Yes, it is a never-ending circle. So, Doctor Unger is correct, again -- but probably not in the way she thinks she is.

Lol. These people really are clueless. My story is exactly the same as yours. I used to surf, snowboard, mt bike, box, run, Crossfit, etc. extremely healthy by any body's standards. Couple of years ago I had bronchitis for about 2-3 months straight. The severity would wane and wax but the second I felt a little better I was lifting or hitting the heavy bag until I couldn't. It eventually cleared up and I went back to my usual routine. Then I noticed once in a while for no reason I would feel like I had a Vegas bachelor party hangover for no reason. I would relax and it eventually went away and I'd start my routine again. These "hangovers" started becoming more sever and lasted longer. Every single time I felt a bit better I started back up until this past summer. I haven't felt better since in fact I was bed bound for 4 months. I really don't understand how these people believe this bullshit. I would love for these bozos to experience what we experience. I'm sure their perspective would be s lot different.