Next CFSAC Meeting - August 18th & 19th, 2015

[Nielk]

To register to attend in person, you need to fill out a form here and e-mail it to CFSACmtg@hhs.gov by August 13t.

To request a public comment spot by phone, e-mail the request to: CFSACmtg@hhs.gov by August 11th - tomorrow!

 

[Nielk]

The draft agenda is up.

 

[duncan]

Looking forward to hearing the Agency Updates, specifically the CDC's two cents.

Does anyone know if someone from the CDC will be discussing what is happening at the CDC relative to its budget?

Is there actually someone at the CDC still assigned to ME/CFS, and if so, will they be able to attend CFSAC or will they be registering pre-emptively with unemployment?

 

[caledonia]

Looking forward to hearing the Agency Updates, specifically the CDC's two cents.

Does anyone know if someone from the CDC will be discussing what is happening at the CDC relative to its budget?

Is there actually someone at the CDC still assigned to ME/CFS, and if so, will they be able to attend CFSAC or will they be registering pre-emptively with unemployment?

The draft agenda does show that someone from the CDC will be there, but who knows what they will discuss.

 

[Kati]

What is most needed is to hear from Francis Collins and how NIH will address research and funding defficiencies following both P2P and IOM report. We can't afford nor tolerate fiddling and waiting.

 

[Nielk]

What is most needed is to hear from Francis Collins and how NIH will address research and funding defficiencies following both P2P and IOM report. We can't afford nor tolerate fiddling and waiting.

Francis Collins doesn't attend CFSAC meetings.

 

[Kati]

Francis Collins doesn't attend CFSAC meetings.

Well it's time that it changes

 

[ricericerice!]

Jennie Spotila has posted about this meeting on her blog and says:
Start working on your comments, because that deadline will be upon us very quickly.

such a small window, I wonder if they actually want to hear from us?

 

[Denise]

Info re. accessing the CFSAC meeting:

"CFSAC Meeting - August 18-19, 2015

• Agenda
  
  
• To access the live video stream Aug 18-19, from 9am – 5 pm, link to www.hhs.gov/live-1
  
• To access the listen-only toll-free teleconference line, dial 888-455-5629, passcode: 9717791#"
  

http://www.hhs.gov/advcomcfs/index.html

 

[ricericerice!]

did anyone manage to submit a comment?

 

[Denise]

I know several people who submitted public comment for this CFSAC meeting and also received an email receipt acknowledging their submission.

 

[Bob]

Is it correct that they use the Eastern Time Zone at the CDC CFSAC (in Washington)?

If so, the 9am start time is 2pm in Britain, and 1pm UTC/GMT.

 

[Denise]

Is it correct that they use the Eastern Time Zone at the CDC (in Washington)?

If so, the 9am start time is 2pm in Britain, and 1pm UTC/GMT.

@Bob - If you are referring to DHHS (Department of Health and Human Services) where the CFSAC meeting is held, YES - they are in Washington DC which is on Eastern time.

 

[Bob]

@Bob - If you are referring to DHHS (Department of Health and Human Services) where the CFSAC meeting is held, YES - they are in Washington DC which is on Eastern time.

Crikey. I had a total brain fail there! It took me a while to work out why you weren't happy to describe them as the CDC. Time for my bed soon! Thanks Denise.

 

[Denise]

Crikey. I had a total brain fail there! It took me a while to work out why you weren't happy to describe them as the CDC. Time for my bed soon! Thanks Denise.

You are welcome Bob. I hope you rest well.

 

[caledonia]

A question from an ignorant UKer:

Did the misappropriation of funds meant for ME/CFS research happen after the move to Women's Health? If so, and this can only be speculated about, do you think it would have happened if ME/CFS had a proper home?

I thought there was only one misappropriation of funds, but after reading 30 Years of Disdain, there appear to have been at least two, if not more. The big one was in the late 1990's and William Reeves was the whistleblower for that. CFS wasn't moved out of NAIAD until the early 2000s. The subsequent one(s) were in the 2000s.

So it appears that misappropriations can happen anywhere, any time.

 

[Sasha]

Just bumping this - this meeting starts at 2pm UK time, 9am US East Coast time.

Will it be on YouTube later? I seem to remember that it usually is.

 

[Sasha]

I see Jennie Spotila has posted her CFSAC testimony (haven't had a chance to read it yet). She's too sick to testify in person or by phone but has submitted her comments for the record.

http://www.occupycfs.com/2015/08/17/cfsac-testimony-jennie-spotila-august-18-2015/

 

[Sasha]

Well, I've just read it and it's superb. I wish there was someone who could read it out on Jennie's behalf at the meeting.

 

[Sasha]

• Agenda
  
  
• To access the live video stream Aug 18-19, from 9am – 5 pm, link to www.hhs.gov/live-1
• To access the listen-only toll-free teleconference line, dial 888-455-5629, passcode: 9717791#"

http://www.hhs.gov/advcomcfs/index.html

Useful info from Denise, there!

This starts in 25 minutes.