Spring 2012 CFSAC Meeting Dates

[SpecialK82]

I haven't seen this posted yet, great to see that it will be webcast live this time:

The Chronic Fatigue Syndrome Advisory Committee (CFSAC), 2012 spring meeting will be held on Wednesday, June 13, 2012 from 9:00 a.m. until 5:00 p.m. EST and Thursday, June 14, 2012 from 9:00 a.m. until 5:00 p.m. EST.



The meeting will be held at the U.S. Department of Health and Human Services, Hubert Humphrey Building, 200 Independence Avenue, S.W., Room 800, Washington, D.C. 20201. For directions please visit http://www.hhs.gov/about/hhhmap.html.



The meeting will be webcast live and available by audio (listening-only). Additional information and the CFSAC agenda will be posted to the CFSAC website by June 4, 2012

 

[*GG*]

Who's going?

GG

 

[cfidsurfer]

What hotel are people staying at?

 

[Denise]

Speak Up About ME will be at the CFSAC.

Reminder - Please let me know if you are participating in Speak Up About ME. (we have arrangements to make, trading cards to order and so on...)

We are looking into hotels...
It would be good to reserve a block of rooms.
To do that, it would help to know about how many rooms we need and if people are sharing rooms, etc.



If you can, please help us defray expenses for Speak Up About ME participants by contributing. Contribute via PR's PayPal link and specify that your contribution is earmarked for Speak Up About ME. Thank you!

 

[cfidsurfer]

I know the CFSAC isn't a protest per se, However it would be cool if we all wore orange prison shirts or the black and white prison stripes, because that's what ME is, a prison. That would make statement! Just look at 'Change for ME Australia' brisbane rally and the sea of red shirts. see here on facebook: https://www.facebook.com/media/set/?set=a.412959372055286.102448.363333707017853&type=3

the orange shirts could have slogans printed on them. For example off the top of my head:

me/cfs prisoner of the nih/cdc

me cfs = life sentence


If anyone thinks this is a good idea, I would be willing to have these shirts made for free.

I think we have pussyfooted long enough!


the meeting is right around the corner so I would need to know very soon if I have any takers.

 

[usedtobeperkytina]

Last Year

Last year, Robert Miller did stage a demonstration outside of CFSAC with jail clothes.

Tina

 

[usedtobeperkytina]

You know, the CDC website has been a topic for last two CFSAC meetings. Has anyone looked it lately to see if changes still need to be made?

 

[cfidsurfer]

Tina, I think Robert is on to something.

 

[m1she11e]

I know the CFSAC isn't a protest per se, However it would be cool if we all wore orange prison shirts or the black and white prison stripes, because that's what ME is, a prison. That would make statement! Iv'e seen the white shirts in the past and they really don't stand out very well. Just look at 'Change for ME Australia' brisbane rally and the sea of red shirts; now that's a statment. see here on facebook: https://www.facebook.com/media/set/?set=a.412959372055286.102448.363333707017853&type=3

the orange shirts could have slogans printed on them. For example off the top of my head:

me/cfs prisoner of the nih/cdc

me cfs = life sentence


If anyone thinks this is a good idea, I would be willing to have these shirts made for free.

I think we have pussyfooted long enough!


the meeting is right around the corner so I would need to know very soon if I have any takers.

I agree that CFS is like being in prison but I am not sure if things like this contribute to us not being taken seriously. Could be wrong but Ive seen some things that are well intended but do us more harm then good.

 

[nanonug]

I agree that CFS is like being in prison but I am not sure if things like this contribute to us not being taken seriously. Could be wrong but Ive seen some things that are well intended but do us more harm then good.

Indeed! I wouldn't be surprised to see the psych ward ambulance pick up some of these "protesters"...

 

[cfidsurfer]

OK, forget it. CFSAC prob isn't the best place to protest anyway.

any of you see 'And the Band Played On?

 

[*GG*]

If you can, please help us defray expenses for Speak Up About ME participants by contributing. Contribute via PR's PayPal link and specify that your contribution is earmarked for Speak Up About ME. Thank you!

I just made a good donation, hopefully 1 of my friends will make one also, he is pretty generous.

GG

 

[Denise]

Thank you very much!
Are you joining us in DC? (hope so!)

 

[Andrew]

You know, the CDC website has been a topic for last two CFSAC meetings. Has anyone looked it lately to see if changes still need to be made?

The website looks to me like the same old white wash. They use a standard method used by political campaigns. It involves selective omission of information and selective placement. Here's how it works:

The GET research is done using a fatigue-only definition. It doesn't even meet the CDC basic requirements. Yet they place GET near the top of the treatment option list, and and leave out the information about the faulty criteria. Compare this to some of the pharmaceutical studies that have success and are based on legitimate definitions of CFS. These are completely absent.

This is a clear case of stacking the deck. The CDC has done nothing to change this. What they are doing it making token changes so they can say they did something, but their overall process is still one of lying by omission.

I wasn't going to testify, but maybe I should pop in and explain this. Are they accepting sign-ups for telephone testimony yet?

 

[Desdinova]

Going by memory the last time I looked all I noticed was they've somewhat altered they're statements about testing. And while they mention CBT and GET the link to the UK NHS NICE (CFS) Guidelines have been removed.

 

[Hope123]

The website looks to me like the same old white wash. They use a standard method used by political campaigns. It involves selective omission of information and selective placement. Here's how it works:

The GET research is done using a fatigue-only definition. It doesn't even meet the CDC basic requirements. Yet they place GET near the top of the treatment option list, and and leave out the information about the faulty criteria. Compare this to some of the pharmaceutical studies that have success and are based on legitimate definitions of CFS. These are completely absent.

This is a clear case of stacking the deck. The CDC has done nothing to change this. What they are doing it making token changes so they can say they did something, but their overall process is still one of lying by omission.

I wasn't going to testify, but maybe I should pop in and explain this. Are they accepting sign-ups for telephone testimony yet?

Yes, Andrew, and everyone else, please comment if there are areas of the website you have concerns about whether it is content, phrasing, placement, etc.
The CDC is continuing to review their website and input from the public, although you know they will never solicit it, is valuable. Otherwise, they'll just assume that it's fine.

Telephone testimony deadlines are not up yet.

 

[Andrew]

Yes, Andrew, and everyone else, please comment if there are areas of the website you have concerns about whether it is content, phrasing, placement, etc.
The CDC is continuing to review their website and input from the public, although you know they will never solicit it, is valuable. Otherwise, they'll just assume that it's fine.

Telephone testimony deadlines are not up yet.

I don't see anything on their website about signing up for phone testimony, or a deadline. Do you have a link?