Sebelius “Responds” to the Experts

[Ember]

“You Mean This Is Not What You Wanted?”

Posted on November 28, 2013 by Jeannette Burmeister

On November 12, 2013—as I found out just yesterday—more than seven weeks after the original open expert letter was sent to her, Secretary Sebelius finally provided a brief “response” mirroring the talking point provided in the FAQs of November 15, 2013 about the IOM contract. Here is the link to the Secretary’s letter....

HHS’s four-paragraph letter is an outright dismissive and perfunctory statement in response to a dramatic, unprecedented and unified plea from virtually all ME/CFS experts. It’s a seemingly calculated slap in the face of not only the experts, but also everybody suffering from this debilitating disease and their families.

 

[Chris]

Thanks for finding this, Ember--yes, it is just a little inadequate to the situation... we should find out in a while just whose hands will deal with us, and then... But they can't stop the good work going on outside the HHS, fortunately.

 

[Firestormm]

@Ember is the CDC part of HHS then? I thought they were wholly separate and if they are then surely it is true what Sebellius says, HHS have not designed criteria and certainly not Fukuda. Mind you I get confused by the American departments so I could be wrong. Thanks.

 

[Ember]

@Ember is the CDC part of HHS then?

CDC Organization: "The CDC is one of the major operating components of the Department of Health and Human Services."

 

[Nielk]

The web of deceit is just thickening......

Sebelius' letter states:

Because HHS does not generally develop diagnostic criteria for disease conditions,

Jeannette points out that:

The CDC (part of HHS) produced the Fukuda diagnostic criteria.

In addition,

Both, the committee for the CCC and the IOM panel are non-governmental groups. Why would HHS adopt the IOM definition as opposed to the CCC definition?

 

[peggy-sue]

They seem to be saying that they have decided that the Canadian Criteria are too old, they want more recent stuff, which takes into account "more recent science".
Therefore it should be the International Clinical Criteria that we should be recommending, not the Canadian.

 

[readyforlife]

Sebelius must think we are complete idiots. WOW...HHS and Sebelius are making complete fools out of themselves. Thank god we have video and CFSAC minutes to prove that they are twisting the truth.

 

[Seven7]

somebody better start baking those up before they "get hmmm unavailable"

 

[caledonia]

Right - the IOM contract was determined to be the most appropriate response to the CFSAC recommendations - for them, not us.

I think I'm starting to hyperventilate...

 

[Ember]

I think I'm starting to hyperventilate...

 

[peggy-sue]

I do keep saying we need a barfing emoticon.....