Next CFSAC meeting June 16-17, 2014

[shannah]

Best question by Donna-
Why was CFSAC not involved in P2P planning?

and immediately side stepped.

 

[Nielk]

Joe Landson's excellent testimony - http://www.occupycfs.com/2014/06/16/guest-post-cfsac-comments-of-joe-landson/

 

[shannah]

Audience looks extremely tiny.

 

[Nielk]

Mary Dimmock - her son receiving Rituximab costing $50,000 a year plus travel to Florida.

 

[Sasha]

Storming testimony from Jeanette there, and a great testimonial to Eileen Holderman.

And wow, did that patient say he used to be a spy?

What an impressive bunch we are!

 

[caledonia]

Dr. Wanda Jones was the cheerleader at the start of the meeting. Told us about how muh has been accomplished at CFSAC in the past ten years. She is at awe of the progress. Phenomenal changes have taken place.

Changes? Progress? Towards what? The status quo? Seriously, what is she smoking?

 

[Nielk]

Changes? Progress? Towards what? The status quo? Seriously, what is she smoking?

Exactly!

 

[shannah]

Changes? Progress? Towards what? The status quo? Seriously, what is she smoking?

Government standards of measurement are in a class by themselves.

 

[Nielk]

Public comment was supposed to be an hour. It only lasted half an hour yet, they insisted in cutting people's testimony from 5 to 3 minutes. Why?

 

[Hope123]

Changes? Progress? Towards what? The status quo? Seriously, what is she smoking?

I think the gov't knows that the patient community is more favorably disposed towards Dr. Jones than not so they are using her to placate us. Whether she actually believes what she is saying is another matter.

 

[Nielk]

I think the gov't knows that the patient community is more favorably disposed towards Dr. Jones than not so they are using her to placate us. Whether she actually believes what she is saying is another matter.

Do they really think that we are so dense? If Wanda says everything is alright, we will believe it?

 

[Sasha]

Are there really only five people in the audience?

 

[Denise]

Are there really only five people in the audience?

Some of us who had hoped to be there couldn't -- illness limitations ya know.

 

[Denise]

Public comment was supposed to be an hour. It only lasted half an hour yet, they insisted in cutting people's testimony from 5 to 3 minutes. Why?

Public comment by phone couldn't be done today --- it seems that the phone service for it wasn't working.

 

[Firestormm]

data sharing platform with autism?

 

[NK17]

This is farcical and a tragedy in slow motion, 30 years and counting ...

We really can't trust "them".

 

[SDSue]

Pardon me while my ignorance shows, but.....

What is this? Who are these people? Are they for us or against us? I'm listening to the first video above, and find that it's making me mad. What a colossal waste of time! The guy that talks at length about how MCS is psychological and then tacks ME/CFS on at the end??? What is that?

 

[Denise]

data sharing platform with autism?

I think he is suggesting that the autism database be "cloned" for ME(cfs). I don't think he is suggesting linking to NDAR (the autism database)

 

[Nielk]

Pardon me while my ignorance shows, but.....

What is this? Who are these people? Are they for us or against us? I'm listening to the first video above, and find that it's making me mad. What a colossal waste of time! The guy that talks at length about how MCS is psychological and then tacks ME/CFS on at the end??? What is that?

my bold

@SDSue - that is the question "Are they for us or against us"?

They are supposed to be "for" us. The voting members are mainly volunteering to help us and really care. I can't say the same for the government representatives. They are basically there, imo, to block any possible success.

 

[Sasha]

Some of us who had hoped to be there couldn't -- illness limitations ya know.

But even so, there used to be loads of people in the audience. I wonder why this meeting is different.