Live feed of 12/13 January CFSAC Meeting

[AndyPR]

I'm going to have to wait for this to go up on YouTube.

I could see slides but had no sound and couldn't quickly find how to solve that so I think I'll wait for the recording too.

 

[Sasha]

If audio really is only via the phone that's a transatlantic phone call so I think I'll just wait!

 

[Denise]

Is it okay for me to collect people's comments about access in this thread and submit them to CFSAC?
@AndyPR @Sasha @Neilk @Kati others @Rrrr

 

[Rrrr]

very hard to listen to a conference call with my brain issues -- and hard to tolerate the CDC spokesperson say how much great work the CDC has done for "cfs" when you know that in reality they are being complete jerks and not changing their website or medical education to reflect the downfall of the psych theory (i.e. the downfall of the PACE study etc). given that exercise HURTS ME patients, it is atrocious that the CDC keeps telling the world that exercise is a good treatment for us.

 

[AndyPR]

Is it okay for me to collect people's comments about access in this thread and submit them to CFSAC?
@AndyPR @Sasha @Neilk @Kati others @Rrrr

Fine with me, thank you Denise

 

[Nielk]

CDC is preparing videos with the experiences of patients acted out by professional actors.

 

[Nielk]

I can just imagine ho that's going to look. Beautiful looking, fit actors acting as ME patients!

 

[Nielk]

FDA speaking now telling us everything they have (NOT) done for us.

 

[Nielk]

Wow - they attended a meeting on May 26, 2016 - follow up of P2P meeting on research needs and gaps.

 

[Nielk]

Oh - more! They also attended the CDC Roundtable on Dec 26, 2016!!!

 

[Denise]

Oh - more! They also attended the CDC Roundtable on Dec 26, 2016!!!

I think she meant 26 SEPT 2016....

 

[Kati]

The phone line quality is really poor. Some of the speaker I could not understand. It is extremely hard to concentrate- I will turn off the lime following NIH update.

This is not an accessible meeting. And yes @Denise feel free to share my comments. And thank you.

 

[JayS]

I'm using Google's Voice app for the audio on my computer. I had almost given up & decided to try that. The process for installing the Cisco app just to see the slides was not easy & ultimately absurd. But Google Voice is working for the audio for the moment. The icon for it is next to the Hangouts icon on my Gmail page.

 

[Sasha]

Is it okay for me to collect people's comments about access in this thread and submit them to CFSAC?
@AndyPR @Sasha @Neilk @Kati others @Rrrr

Fine by me! Bear in mind, though, that the CFSAC is a US govt group and they're not obliged to consider the problems of overseas patients in accessing their meetings live. It might be better to stick more closely to the concerns of US citizens who are having problems.

 

[Nielk]

Carol Head from SMCI - only 7% of CFSAC recommendations for the past three years have been implemented.

 

[Kati]

Carol Head killing it! Talking about the big elephants in the room- the public health crisis and how CFSAC has no traction at HHS- only 7% of the CFSAc recommendations are approved and acted upon.

 

[Kati]

Carol Head: "this is a public health crisis!" Bravo!
"This is a dire public health problem"

 

[Sasha]

I think Carol Head is terrific. I'm looking forward to hearing what she said!

 

[mango]

 

[Nielk]

All the advocate and patient testimonies were great! If anyone has written copies of them please post it on this thread.