Another CFSAC Violation- Jennie Spotila

Nielk

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http://www.occupycfs.com/2014/11/24/another-cfsac-violation/

"Today I must report that once again, the CFS Advisory Committee violated federal law. This time, recommendations made by the Committee were illegally altered after the public meeting. The story of what happened, how I got it fixed (hopefully), and who might be responsible is another disturbing chapter in the saga of how HHS tries to disregard the law with impunity.

What Happened

After the recommendations from the March 2014 meeting were posted on the CFSAC website, Mary Dimmock and Denise Lopez-Majano noticed that something was wrong. The recommendations did not match what they recalled from watching the meeting. At first, we thought it was just the omission of references to the Canadian Consensus Criteria, but as I looked more carefully I found the changes went way beyond that."( More HERE)
 
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SilverbladeTE

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By now, for goodness sake, people should accept there IS a conspiracy against this illness. This is more proof that some folk "want it to go away"
Of what type/scope this criminal abuse of process and responsibility is, who knows?
probably several reasons/outlooks/groups pushing things their own way regardless of fact. One I bet is because they don't want proven to have negligently overlooked and abused and thus contributed to the illness and deaths of millions of people.
 
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A.B.

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There's quite a difference between

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) recommends that HHS provide funding and opportunities for dissemination of information through the development of a curriculum at all U.S.- based medical schools providing the tools needed for physicians and other medical professionals to recognize ME/CFS as defined solely by the 2003 Canadian Consensus Criteria and to make appropriate referrals.
and

We recommend that HHS provide funding and opportunities for dissemination of information about ME/CFS through the development of a curriculum for all US medical schools to provide necessary tools for teaching medical students and young physicians to recognize and treat patients with this illness.
The second version is vague and allows them to pick whatever definition of CFS they like.

Also note how the referrals part is removed - no specialist referrals for patients.

There are several other parts where references to the CCC acting as guidelines are simply removed, whith the result being a vague recommendation that lets them do whatever they want in the end.
 

jspotila

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There's quite a difference between



and



The second version is vague and allows them to pick whatever definition of CFS they like.

Also note how the referrals part is removed - no specialist referrals for patients.

There are several other parts where references to the CCC acting as guidelines are simply removed, whith the result being a vague recommendation that lets them do whatever they want in the end.
Yes, the "dumbing down" of the recommendations is pretty egregious. One effect was making it easier for the Department's response to be yes, yes, we're doing that, yes. That response disappeared from the CFSAC website along with the illegal recommendations on October 7th.
 

user9876

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Is there an audit body that checks how government functions in the US? To me there is a serious issue where a committee recommendations are changed and this leads to the award of a single sourced contract. The lack of strong process around these issues leaves an organization open to internal fraud and hence I think auditors would see it as a serious audit violation.
 

Denise

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I wonder if a global letter from advocacy proclaiming a complete lack of confidence in the two individuals, and asking them to step down and cease any involvement in any CFS related matter would have an impact?

Hi,
If I understand correctly (not a great brain day on my end) @alex3619 your suggestion is a letter about lack of confidence in Gailen Marshall and Nancy Lee?
Gailen Marshall is no longer on the CFSAC - his term ended earlier this year (replaced as chair by Sue Levine) and Barbara James will be replacing Nancy Lee as CFSAC DFO presumably beginning with the December 2014 webinar meeting (http://www.hhs.gov/advcomcfs/meetings/)
 

alex3619

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@ Denise, yes. That is well and good, but what about other involvement. Its not just about CFSAC, but about ANY involvement in CFS. I am aware CFSAC involvement is often temporary, but for Nancy Lee in particular I think there is other involvement? Maybe someone can comment.

Its also not just about these two. We need to send a message. Any involvement that is demonstrably suspect may result in advocacy action. We have been playing too nice for too long. I am not just talking about the US either, but globally. Nice has failed us, its time to be nasty.
 

*GG*

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I wonder if a global letter from advocacy proclaiming a complete lack of confidence in the two individuals, and asking them to step down and cease any involvement in any CFS related matter would have an impact?
Good question but doubt it. The gov't doesn't give a shit about us, about time most people realize this and start voting for less gov't!

GG
 

Denise

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but for Nancy Lee in particular I think there is other involvement? Maybe someone can comment.

Its also not just about these two. We need to send a message. Any involvement that is demonstrably suspect may result in advocacy action. We have been playing too nice for too long. I am not just talking about the US either, but globally. Nice has failed us, its time to be nasty.

Once Barbara James is officially the CFSAC DFO, I believe that Nancy Lee's official involvement ceases. That said, Nancy Lee is Barbara James' boss, so the degree of Barbara James' autonomy remains to be seen.

As for having been too nice too long and suffering as a result of (the) NICE (guidelines) - I agree that most of us have tried to be civil. I also think there is a place for all voices - civil, rowdy, etc.
I also think we need to work strategically no matter what sort of voice we use.
 

Denise

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I do not recall for sure, but who is the person who is coordinating responses to patient letters re P2P and IOM??

I believe that responses re P2P would be via Susan Maier of NIH (former CFSAC ex-officio).
Responses re IOM would likely come from HHS, and I believe (someone correct me please if I am wrong) they would come from Barbara James.

Who have people recently been submitting letters to regarding IOM? (just curious - and also curious as to the responses received)