Another CFSAC Violation- Jennie Spotila

[Gemini]

Is there an audit body that checks how government functions in the US?

U.S.House Committee on Oversight & Government Reform (Chairman Rep. Jason Chaffetz, R-Utah) is one.

Studies the "operations of government activities at all levels," investigates misconduct, ensures transparency, oversees how taxpayers monies are being spent among other things.

"Supression of accepted scientific data" was an issue dealt with a while back.

 

[CBS]

@jspotila,

Thank You!

The last month's IOM, P2P and now CSFAC dishonesty and revelations from (let alone the need for) numerous FOIA requests (many thanks as well to Jeannette Burmeister) make it very clear that the HHS sees ME/CFS as a political problem to be managed and not a medical problem to solved.

It is pathetic that ME/CFS patients need lawyers to protect them from their own government's blatant violations of the law before we can even begin to get the attention of the scientists/doctors who could better understand this disease and how to diagnose, treat and someday cure this disease.

Lack of progress towards a better understanding of ME/CFS over the last three decades is no accident and it's not difficult to understand. It is exactly what the HHS wanted. If only we'd all just go back to work (with the help of a little CBT and GET of course) and stop trying to make them give a damn about us.

 

[SilverbladeTE]

"Voting for less government" is like trying to put a fire out with napalm

(meant in humorous and deeply cynical/thoughtful way, plus, yeah, you can do both, but odds of it going astray are huge)
more votes = proof of more folk to lead...like heroin to an addict

 

[Ecoclimber]

There may be some that disagree with my comment but I believe for right now the best way for everyone reading this is to immediately contact your Congressional and Senate Representatives to express your outrage! This ship is about ready to dock!

Since this is happening under a Democratic administration, Democrats can ill afford bad publicity since an election is just around the corner. Apparently for some reason, the head of the NIH, Phil Collins and those directly beneath him, did not receive President's clear and concise executive order in a memo directing all executive heads and agencies to a more open and tranparent government or perhaps they feel they are immune to such excutive orders.
http://www.opencongress.org/wiki/Obama_Transparency_Record#Transparency_and_Open_Government_Memo

Or perhaps the agency and department heads within his administration are in rebellion to Obama's administration directives?
http://www.bloomberg.com/news/2012-...sclosure-test-with-19-in-20-ignoring-law.html

Then we have Obama's promise to the ME/CFS community to elevate Chronic Fatigue Syndrome in priority within the NIH and the HSS, assigning his Deputy Chief of Staff to follow their efforts. Well that has certainly backfired! http://phoenixrising.me/archives/13145

I agree with @Gemini comment. This could be the best avenue to seek an investigation on abuse and violation of Federal Law by an administrative head!

U.S.House Committee on Oversight & Government Reform (Chairman Rep. Jason Chaffetz, R-Utah) Contact
Oversight Committee’s secure whistleblower platform here to confidentially report waste, fraud, abuse or mismanagement. https://wb-gop-oversight.house.gov/

Depending on the outcome of P2P, AHRQ Review and IOM reports, I believe a civil RICO against Francis Collins NIH should be considered. We need to go nuclear if the NIH and the CDC is going to go nuclear against this community. P2P report will be disemminated to all healthcare providers, to all those within the medical profession and will be added to the curriculum within medical schools.

 

[Kati]

Susan Maier deserves to be fired and deserve a vote of non-confidence. She totally despises patients with ME

 

[Ecoclimber]

Susan Maier deserves to be fired and deserve a vote of non-confidence. She totally despises patients with ME

I believe she has an eating disorder as evidence in her emails

 

[medfeb]

Ecoclimber said "Depending on the outcome of P2P and IOM reports, I believe a civil RICO against Francis Collins NIH should be considered."

Its not just the P2P Workshop. The final version of the AHRQ Evidence REview will be issued as a separate standalone document on or just before the first day of the P2P Workshop and AHRQ states that the final version can be used for clinical guidelines and reimbursement:

"The final report (not draft) may be used, in whole or in part, as the basis for development of clinical practice guidelines and other quality enhancement tools, or as a basis for reimbursement and coverage policies. AHRQ or U.S. Department of Health and Human Services endorsement of such derivative products may not be stated or implied."​

We won't see how AHRQ responded to comments til the final report is published and there will be no further opportunity to provide input.

 

[alex3619]

The real problem with government is lack of transparency and accountability ... all government, everywhere, regardless of size and political slant. If we had more transparency and accountability from government agencies purporting to operate on our behalf then things would be much much better. Government needs to serve the people, or else we only live in a sham democracy.

 

[*GG*]

[QUOTE="Ecoclimber, post: 527383, memb
er: 622"
Then we have Obama's promise to the ME/CFS community to elevate Chronic Fatigue Syndrome in priority within the NIH and the HSS, assigning his Deputy Chief of Staff to follow their efforts. Well that has certainly backfired! http://phoenixrising.me/archives/13145

I agree with @Gemini comment. This could be the best avenue to seek an investigation on abuse and violation of Federal Law by an administrative head!

U.S.House Committee on Oversight & Government Reform (Chairman Rep. Jason Chaffetz, R-Utah) Contact
Oversight Committee’s secure whistleblower platform here to confidentially report waste, fraud, abuse or mismanagement. https://wb-gop-oversight.house.gov/

Depending on the outcome of P2P, AHRQ Review and IOM reports, I believe a civil RICO against Francis Collins NIH should be considered. We need to go nuclear if the NIH and the CDC is going to go nuclear against this community. P2P report will be disemminated to all healthcare providers, to all those within the medical profession and will be added to the curriculum within medical schools.[/QUOTE]

Chaffetz is a Republican, he cannot possibly care about us, I mean don't you watch the news and all the wars they have going on against the poor and weak! LOL

GG

 

[RL_sparky]

the head of the NIH, Phil Collins

You were probably listening to Genesis as you wrote that because the NIH Director is Francis Collins. LOL
But I agree with your post just having a little fun!

 

[RustyJ]

Time to abandon CFSAC? No doubt it is used to spread govt agendas. So participation is just abetting. Getting harder for those who are cooperating with the govt to justify their stance.

 

[alex3619]

Time to abandon CFSAC? No doubt it is used to spread govt agendas. So participation is just abetting. Getting harder for those who are cooperating with the govt to justify their stance.

It might be so. We will know more after the next CFSAC meeting, but it could indeed be time.

 

[Iquitos]

Time to abandon CFSAC? No doubt it is used to spread govt agendas. So participation is just abetting. Getting harder for those who are cooperating with the govt to justify their stance.

Yes, CFSAC is just an excuse to say "See, we're working on it." That it is under the Office of Women's Health is another clue that the real disease is being buried in bureaucracy, the Feds pretending to do something while doing only negative things.

 

[Ren]

I thought one advantage with CFSAC is that it has helped to create a public record and document NIH obscurantism (my new word ).

Otherwise, in addition to the contact info shared by gemini and Eco, I wanted to suggest "Judicial Watch, Inc., a conservative, non-partisan educational foundation, promotes transparency, accountability and integrity in government, politics and the law..."

http://www.judicialwatch.org/about/

https://www.judicialwatch.org/about/contact-information/

Beyond what their website states, I don't know anything about this group though. Maybe someone can suggest a politically left equivalent as well??

 

[leela]

It is just unfathomable the lengths and efforts these people will go to set us back another decade or three.
Imagine all that time, energy, and brainpower spent actually trying to help rather than obfuscate.

How did they all get the memo to drive this illness into the dumpster? Where did the original directive come from to deliberately "make" this disease into a non-entity while smiling and pretending to help? They're all doing it, they've been doing it for a long time, and anyone who's not doing it gets hung out to dry.

I have had it with these people. Now there is actual *proof* they are criminals, and still they just sit there collecting their salaries, laughing at patients, whining about us insisting they actually perform the duties they only pretend they are doing.

And we're the ones who have trouble sleeping at night (?!)...

Thank you as always, @jspotila, for your dedication and perseverance.

 

[jimells]

"Voting for less government" is like trying to put a fire out with napalm

I always vote for the candidate most likely to win. After all, I don't want to waste my vote!! (no, not really. I refuse to vote. It only encourages them. Plus it tends to legitimate a fundamentally corrupt and fraudulent system.)

Actually I always vote for Tweedle Dee, 'cause he is so much better than Tweedle Dum. Or is it the other way around??

 

[alex3619]

Yes, CFSAC is just an excuse to say "See, we're working on it." That it is under the Office of Women's Health is another clue that the real disease is being buried in bureaucracy, the Feds pretending to do something while doing only negative things.

Many advocates have long held this opinion. In this view its for public benefit, and patient benefit, as propaganda, without leading to any real change. Yet it does serve one purpose. It serves as a public record. It shows not only what issues there are, and what recommendations were made (if recorded and communicated accurately) but also the severe lack of official response.

 

[zzz]

Where did the original directive come from to deliberately "make" this disease into a non-entity while smiling and pretending to help?

Stephen Straus, whose ghost still walks the halls of the NIH.

They're all doing it, they've been doing it for a long time, and anyone who's not doing it gets hung out to dry.

I first realized this after reading Osler's Web - a book written eighteen years ago. Your statement was as true then as it is now.

I have had it with these people. Now there is actual *proof* they are criminals, and still they just sit there collecting their salaries, laughing at patients, whining about us insisting they actually perform the duties they only pretend they are doing.

And this statement equally applies to the CDC of the late 1990s, where $10 million dollars appropriated by Congress for research into CFS was illegally diverted by the CDC into projects which they were more interested in. When this came to light, was there a scandal? Not outside the CFS community. Did anyone go to jail? No. Was anyone fired? No. Was anyone even demoted? No. But they were told not to do this again.

Thank you as always, @jspotila, for your dedication and perseverance.

Yes, thank you, Jenny; your work is deeply appreciated. The struggle here is long and difficult, but it is people like you who allow us to proceed at all.

 

[Forbin]

When it comes to the Canadian Consensus Criteria, it looks like NIH must stand for "Not Invented Here."

 

[alex3619]

And this statement equally applies to the CDC of the late 1990s, where $10 million dollars appropriated by Congress for research into CFS was illegally diverted by the CDC into projects which they were more interested in.

Actually I think the problem was that this was NOT illegal, though perhaps immoral, and unethical, and certainly highly irregular. It also angered Congress.