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

[waiting]

Last thing I heard before the jazz music started for the lunch break was somebody moaning, "Oh, hell..."

Think that was Mary-Anne.

So, we have "oh, hell" and just now, "ay, ay ay". Sums up the whole mess pretty well.

 

[Scarecrow]

If ME/CFS is ok, but CFS is not, ergo ME should be ok.

The voice of logic and reason. Did you notice they so nearly got to this realisation, then ducked away again?

 

[Cheshire]

Proposal 16

 

[halcyon]

Beth Unger was eerily silent throughout the whole name conversation.

 

[Cheshire]

 

[Kati]

What's a DFO?

Designated Federal Officer

 

[Cheshire]

 

[Sasha]

Hi everyone - I couldn't take time off from NIH until this afternoon but I'm here at CFSAC now if you want to see what I look like I'm guy with black blazer and light pink shirt in the audience

I thought you were a woman because your username is 'kitten'...

Bit of a shock there.

 

[Sasha]

I thought Carol Head made an exceptionally powerful speech. She seems like a fine leader, and someone who might be able bring all sides together in collaboration to inspire change, perhaps even at the NIH.

And she had me in tears re the headstone.

I agree - she had me weeping buckets too.

And she made very good points (very diplomatically) about the need for a long-term set of reviewers who are knowledgable about ME for the NIH panel.

 

[waiting]

I agree - she had me weeping buckets too.

And she made very good points (very diplomatically) about the need for a long-term set of reviewers who are knowledgable about ME for the NIH panel.

I'm not up on it, but wasn't that what the Special Emphasis Panel (SEP) was *supposed* to be doing?

 

[jimells]

but I'm leaning more towards the explanation that Wessely et. al. are lying sacks of dung and that illness definitions ultimately aren't all that important. As long as doctors are informed and use their brains even a bad definition will work.

Sir Simon is certainly a lying sack of dung! Thanks for the comic image - a real relief from the tedium of listening to the meeting.

I certainly get tired of the endless repetition of the same old arguments about names and definitions. I want to get well, dam it! What do I care what it's called?

Really, the committee needs to make just one recommendation, then they should refuse to meet until it is implemented:

FIRE NIH DIRECTOR COLLINS

Even if he is not part of the corruption around this disease, it is his responsibility to fix the current problems at NIH. And he has refused to do so, even going so far as to promote the idea that there aren't any good researchers submitting grant applications. This is probably why the researchers just sent a letter to Senator Mikulski - they are pissed at his insults and are finally fighting back against NIH intransigence.

 

[Scarecrow]

I thought you were a woman because your username is 'kitten'...

Bit of a shock there.

Blatant stereotyping! Don't worry @leokitten - Sasha did the same to me (but the other way round)

 

[Kati]

I agree - she had me weeping buckets too.

And she made very good points (very diplomatically) about the need for a long-term set of reviewers who are knowledgable about ME for the NIH panel.

What were the reference to the headstone? i missed it

 

[Cheshire]

 

[Kati]

View attachment 12232

There is too much 'fatigue' mention. My disease is not about being tired. I am sick.

 

[jimells]

I'm not up on it, but wasn't that what the Special Emphasis Panel (SEP) *supposed* to be doing?

No. Their job is to deny applications, 'cause it's a psychosomatic disease. That's why they put psychobabblers on the panel.

 

[Sasha]

Blatant stereotyping! Don't worry @leokitten - Sasha did the same to me (but the other way round)

Well, look at your avatar!

Just don't look at mine...

 

[Cheshire]

 

[Sasha]

What were the reference to the headstone? i missed it

I don't know if you can see FB, Kati?

https://www.facebook.com/canaryfilm/posts/600975450040192

 

[Cheshire]