Spinning Around-CAA Putting Political Spin on the IOM

[Jeannette Burmeister]

http://thoughtsaboutme.com/2013/10/03/spinning-around/

But what mainly piques my interest is the fact that the CAA quite obviously is assuming that the IOM contract will go forward despite the fact that the open expert letter is still in place. It is true that Dr. Bateman has, in her statement of yesterday, changed her support for the adoption of the CCC and her opposition to the IOM contract. But apparently, none of the other 34 signatories of the expert letter have followed suit. The letter is still in place and all the other experts are presumably still very much standing by it. One person changed her mind. One! It seems to be an overreaction of the CAA to go from that to “ok, we are done here.” A reaction that is not at all in the patients’ best interest!
Moreover, we have not heard from Secretary Sebelius yet in response to the open expert letter. Why assume that she will not be convinced by the overwhelmingly persuasive argument that it’s unreasonable to spend—in the case of a grossly underfunded disease—around $1 million on an IOM contract (that’s usually a ballpark estimate for IOM contracts) for the creation of a definition by non-experts for which there is no need since we have the expert-endorsed CCC readily available? The CAA is jumping the gun here and one can’t help but wonder if this is an attempt to demoralize patients and advocates and cause them to drop their support of their experts. If the CAA just repeats often enough that the IOM contract is a done deal, it will become a self-fulfilling prophecy because opposition will dwindle.
My plea to patients and advocates out there: Don’t fall for it! The open expert letter is the strongest tool we’ve had in years, maybe ever. Finally, our experts have come together and a majority agrees that the CCC should be adopted (and updated from time to time based on the latest findings) and that the IOM contract should be abandoned. Our experts need our support and gratitude now more than ever. Starting to think about which patient representative should be on the IOM committee is dangerous and exactly what the CAA wants us to do. It’s counter-productive. Instead, it is in our best interest that there be no IOM committee for the creation of a disease definition. Our energy needs to go into making sure of that

But most importantly, why the quest for so much power over the fate of ME patients in the hands of just two individuals, Suzanne Vernon and Fred Friedberg? With such concentration of power without any checks and balances, why would patients possibly be concerned? Without addressing any substantive concerns, the CAA’s statement is meaningless. It's spin.

 

[alex3619]

Pity the CAA is not as an attractive proposition to ME advocacy as Kylie is to the average male:

http://www.youtube.com/watch?feature=player_detailpage&v=blJbs98dWVE

"Spinning Around"
Spinning around
Oooh-oh

I'm spinning around
Move out of my way
I know you're feelin' me 'cuz you like it like this
I'm breakin' it down
I'm not the same
I know you're feelin' me 'cuz you like it like this

Clearin' this house out of joy that I borrowed
From back in the day
Threw away my old clothes
Got myself a better wardrobe
I got something to say

I'm through with the past
Ain't no point in looking back
The future will be
And did I forget to mention that I found a new direction
And it leads back to me?

I'm spinning around
Move out of my way
I know you're feelin' me 'cuz you like it like this
I'm breakin' it down
I'm not the same
I know you're feelin' me 'cuz you like it

Mistakes that I made givin' me the strength
To really believe
And no matter how I take it
There's no way i'm gonna fake it 'cuz it's gotta be real

I've got nothin' left to hide
No reason left to fight
'Cuz the truth's given me a new freedom inside
Gettin' rid of my desire
Do you like what you see?

I'm spinning around
Move out of my way
I know you're feelin' me 'cuz you like it like this
I'm breakin' it down
I'm not the same
I know you're feelin' me 'cuz you like it like this

Ooh-oh baby, baby, baby
You know you like it like this
Ooh-oh baby, baby, baby
You know you like it like this
Ooh-oh baby, baby, baby

I'm spinning around
Move out of my way
I know you're feelin' me 'cuz you like it like this
I'm breakin' it down
I'm not the same
I know you're feelin' me 'cuz you like it like this

Oh, I'm not the same
You like it like this
Ooh-oh

 

[Andrew]

http://thoughtsaboutme.com/2013/10/03/spinning-around/

The CAA and Bateman are presenting this whole thing as a golden opportunity to improve on the CCC. But we already have a project to do that. It is called the ICC. And the ICC is being vetted right now. There is no justification for putting control of an illness into the hands of non-experts.

 

[Iquitos]

Yes, it's another divert and delay tactic, wasting more than 18 months and $1 million.

 

[Nielk]

What does the HHS have to gain by not adopting the CCC? I can't wrap my mind around it. This is what CFSAC members have recommended. This is what the experts have stated and what the majority of patients want. They could have saved a million dollars. Why? Why? Why?

 

[Iquitos]

That's a good question. IF/when it is answered, it will be a whole new day in this illness. NIH and CDC have been trying to dismiss, ignore, hide or psychologize mecfs for at least 30 years now.

This is a Primetime Live news piece on chronic fatigue syndrome (CFS) from 1996. It covers the sudden U.S. outbreaks in the 1980s and the CDC's lack of response. Discussion includes Dr. Paul Cheney, Dr. Daniel Peterson, Dr. David Bell, Elaine DeFreitas, Hillary Johnson, and Osler's web.

Video is courtesy of rescindinc.org

 

[Iquitos]

Dr. Peterson says the CDC is not about research but rather "damage control." He said, in 1994, the NIH "was not going to help."

Between minutes 4:50 and 5:50