Dec 13-14, 2017 | US Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting

[Sasha]

Just bumping this again - Day 2 starting 2pm UK time (although we're all likely to be on the live S4ME Q&A thread with the biobank team then!

The most interesting item looks like this one:

2:00 p.m. Research Update on Adults ME/CFS: Jose Montoya, M.D. CFSAC Member​

Oh! Nearly forgot this. It's time now for this 2pm thing (7pm UK time).

Edit: Here's the link again: https://www.hhs.gov/live

 

[Sasha]

I think Dr Montoya may be speaking already now.

 

[ukxmrv]

Yes he is and slow enough for me to understand him his time!

 

[Dolphin]

Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Summary

http://solvecfs.org/chronic-fatigue-syndrome-advisory-committee-cfsac-meeting-summary/

• About 13,000 patients currently receiving disability for ME/CFS – ME/CFS is most often allowed when no secondary impairment is listed
• SSA admits that that the “administrative backlog” is substantial – process very slow. Overall, 70% of judgements are awarded in first 2 stages of the disability process, but the rate is only 15% ME/CFS. Poorly educated medical professionals hinder process

 

[Sly Saint]

Article on Prof Faith Newton

"DSU's Newton heads National Chronic Fatigue Syndrome Advisory Committee"

http://www.doverpost.com/news/20180...l-chronic-fatigue-syndrome-advisory-committee

 

[MErmaid]

https://www.hhs.gov/ash/advisory-committees/cfsac/meetings/2017-12-13/index.html

Now Available:

Transcripts for Day 1 & Day 2

Videos