Just a thought

[Andrew]

My impression is most of our protest is about the inadequacy of the IOM and the fact that the experts are in support of the CCC. What about the fact that the HHS lied (or misrepresented) the CFSAC vote. Isn't that behavior that deserves administrative discipline (or counseling). Not to mention that I think the letter announcement about the IOM had the CFSAC name at the bottom. Why is this not a blatant case of administrative misconduct.

 

[Nielk]

My impression is most of our protest is about the inadequacy of the IOM and the fact that the experts are in support of the CCC. What about the fact that the HHS lied (or misrepresented) the CFSAC vote. Isn't that behavior that deserves administrative discipline (or counseling). Not to mention that I think the letter announcement about the IOM had the CFSAC name at the bottom. Why is this not a blatant case of administrative misconduct.

You are very right, Andrew. As a matter of fact, two voting members of CFSAC are signatories to the experts' letter to HHS urging them to cancel the IOM contract. This action is in direct breach of the CFSAC recommendation.

This was discussed in a PR article here.

We are the victims of a ‘bait and switch’
The bait
In October 2012, the CFS Advisory Committe (CFSAC) advanced the reasonable recommendation that HHS convene a workshop of ME/CFS expert clinicians, researchers and advocates to act in consultation with CFSAC members, and work on a case definition taking the 2003 Canadian Consensus Criteria as a starting point.

Nancy Lee, Designated Federal Officer, stated at this meeting:

“In general, the Federal Government isn’t in the position of telling doctors a case definition. I think a recommendation from CFSAC that the Secretary should tell people to use “X” definition will go nowhere because that’s not what we do. This is a clinical decision that has to come from the clinical community…

I’ve been in two or three meetings with the Secretary since I’ve been here. One of them was around this: the idea of a case definition, the need for one, and in addition, the need for a different name for the disease. She basically said that this has to be coming from the medical community.”

The switch
HHS refused to adhere to the recommendation from CFSAC, as was heatedly debated at the May, 2013 meeting. Then, on August 27, without any consultation from ME/CFS stakeholders or CFSAC members, HHS announced a sole solicitation to the Institute of Medicine (IOM) for a “Study on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.”

You might ask: “What’s wrong with that? They are working on a case definition, which is what we asked for, isn’t it?” And that is where the “switch” comes in to play.

Instead of complying with the reasonable recommendation from CFSAC, HHS took the “bait” that we thought was reasonable — the proposal to work on a better case definition — and then switched it all around in order to fit their own agenda.

Gone are the expert clinicians, researchers and patient advocates.

Gone is the consultation.

The Department of Health and Human Services in their wisdom have chosen to use non-experts to redefine our disease.

 

[justinreilly]

Good point, Andrew. They are acting like the snakes they are.

 

[caledonia]

It seems like, in that case, the CFSAC ought to be screaming bloody murder. And by that I mean, not waiting complacently until the next meeting.

 

[Andrew]

It seems like, in that case, the CFSAC ought to be screaming bloody murder. And by that I mean, not waiting complacently until the next meeting.

I agree. Or we could scream bloody murder to the press about this.

 

[alex3619]

What next CFSAC meeting? It was postponed. I wonder why?

 

[SOC]

What next CFSAC meeting? It was postponed. I wonder why?

Probably a legitimate result of the utter mess caused by the US government shutdown. Lots of organizations are still trying to sort themselves out.

 

[Delia]

My impression is most of our protest is about the inadequacy of the IOM and the fact that the experts are in support of the CCC. What about the fact that the HHS lied (or misrepresented) the CFSAC vote. Isn't that behavior that deserves administrative discipline (or counseling). Not to mention that I think the letter announcement about the IOM had the CFSAC name at the bottom. Why is this not a blatant case of administrative misconduct.

This is a tricky area in my experience. It all depends on who and when you bring these kinds of misconduct up.

1) if brought up to representatives or government officials/workers they identify with the accused (since this kind of misconduct is pretty much normal) and protect their peers

2) if brought up right now, in phone calls to the staffers of the top Democrats on the HHS committee (Tom Harkin and Patty Murray) and that we are organizing and preparing statements for the media and will share all relevant documentation of the misconduct, as well as the waste of tax money, if this unnecessary, expensive and harmful IOM contract is not cancelled ASAP.

THERE is a very good chance of being successful here. they are wanting no more black spots on Sebellius right now to add fuel to the current calls for her resignation.

Because the Administration/President/Democrats DO NOT want a reappointment process that would derail the rest of this year and into the next, interfere with the Affordable Healthcare Act, and interfere with the continuing budget negotions coming up...

For those reasons and more it will be likely to get Harkin, Murray and other Dems to out pressure on Sebellius to cancel the contract,

I hope I wrote this ok. Follow my statements in your calls to Harkins and Murray's offices: ask for the staffer in charge of the hSS committee for the Senator(s)

And follow what I said in point 2, and be polite, not angry, helpful and resolute.

No threats.

No swearing.

Just a statement that we are ready to go public. But if the contract is gone, we'll have no need to start our media campaign.


Remember, the staffers can be your best friend, or worst enemy. They are the gatekeepers of the information and contact.


Phone numbers:

Tom Harkin 202-224-3254

Patty Murray 202-224-2621