Tag Archives: HHS

Holding HHS Accountable for Unrelenting and Unrepentant Legal Violations

Many members of the community have called out HHS for legal violations over the years, such as Dr. Mary Ann Fletcher and Ms. Eileen Holderman confronting Dr. Nancy Lee, DFO of CFSAC, for her attempted intimidation of CFSAC members by … Continue reading

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Yes, CFSAC, there is a FACA violation

“Yes, Virginia, there is a Santa Claus.”–From an 1897 editorial, “Is there a Santa Claus?” of The New York Sun I was contacted by a member of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) regarding my blog post, “Oops, they did … Continue reading

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Oops, they did it again! CFSAC violates FACA

This is a post about the violation of federal law by CFSAC yet again. This is also a post about how HHS has controlled CFSAC’s input on the P2P report. CFSAC violated FACA, the Federal Advisory Committee Act, again. Not … Continue reading

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December 2014 CFSAC Comments: HHS’s Complete Disregard for Law and Health of Patients

In January, I sued HHS and NIH for violation of the Freedom of Information Act, FOIA, in connection with my FOIA request for documents relating to the IOM study. I won the lawsuit by prevailing on my summary-judgment motion for … Continue reading

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P2P FOIA Documents, Part 6—”File all these responses. No need to answer them directly.”

Here are more P2P emails that were produced to me after I won my IOM FOIA lawsuit. Today’s documents are NIH and AHRQ emails relating to inquiries from the public regarding the ME/CFS P2P program and the “TPs,” the talking points NIH developed … Continue reading

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Federal Court awards $139,147 in Attorneys’ Fees Against HHS and NIH in IOM FOIA Case

The U.S. District for the Northern District of California awarded me today–having won my FOIA lawsuit–my entire attorneys’ fees in the amount of $139,147. Judge Vince Chhabria ordered the defendants, HHS and NIH, to pay me these fees. Please see below for a … Continue reading

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P2P: “Pleased to Participate?” Not. Count me out!

Here is my open protest letter to Secretary Burwell (with carbon copies to Dr. Collins and Dr. Frieden) regarding the ME/CFS P2P program. As you will note, I am not engaging substantively at all. Instead, I am protesting the process … Continue reading

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P2P: Don’t Buy the Hype! Protest!

The reason why I will not cooperate with, or participate or engage in, the P2P process is very simple. HHS and NIH have shown time and time again that they do not have ME patients’ interest at heart. This disturbing … Continue reading

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US District Court: HHS/NIH Violated Federal Law in Response to FOIA Request for IOM Documents

I am pleased to give an update on my FOIA lawsuit: Yesterday, the United States District Court for the Northern District of California ruled that HHS and NIH (government) violated the Freedom of Information Act (FOIA) when they improperly withheld … Continue reading

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OIG Fails to Investigate IOM Conflict of Interest & Tells ME/CFS Patients to Buzz Off

And once again, I received a perfunctory reply from the Office of the Inspector General (OIG) basically telling the entire ME/CFS community to buzz off (my reply is below). Am I surprised? Absolutely not. We’ve been mistreated and disrespected by … Continue reading

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The IOMperor Has No Clothes: IOM Admits Lack of Expertise

Apparently, Kenneth Shine, former president of the Institute of Medicine (IOM) and chair of the IOM committee that was tasked by the VA with the development of a case definition for Gulf War Illness, had a gut feeling about the … Continue reading

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Jeannette Burmeister’s IOM-Meeting Comments

IOM Meeting January 27, 2014 In-Person Comments by Jeannette Burmeister Hello.  I’m Jeannette Burmeister and I’m an attorney. I’ve heard some people at HHS are confused about patients’ deeply-felt opposition to your project.  Let me explain in simple terms why: … Continue reading

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Want to Help in the IOM Fight? Sign This Petition!

Several patients and advocates will travel to D.C. to attend the January 27, 2014 IOM meeting, potentially the only IOM ME/CFS meeting that will be open to the public. This trip will come at great cost to folks, not only … Continue reading

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Federal Lawsuit Filed Against HHS and NIH Relating to IOM “Study”

I’m m mad as hell and I’m not going to take this anymore!—Movie “Network” (1976) Today, I filed a lawsuit against HHS and NIH in the U.S. District Court for the Northern District of California for failure to comply with … Continue reading

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IOM in Full Stealth Mode: No Information on Potentially Only Meeting Open to Public

The first IOM meeting to develop diagnostic criteria for “ME/CFS” is scheduled for the 27th and 28th of this month. The afternoon of the first day is open to the public and will include a public-comment period. So, what’s the … Continue reading

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After OIG Dodges Charge of IOM’s Conflict of Interest, Meaningful Reply Demanded

[Updates: 2014/04/04: IOM-OCI-OIG … OMG! 2014/05/28: OIG Fails to Investigate IOM Conflict of Interest & Tells ME/CFS Patients to Buzz Off] I received a response from the Office of the Inspector General (OIG) to my request to investigate the IOM’s organizational conflict of interest (See … Continue reading

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HHS and the IOM Saga: The Definition of Insanity and a Bad Case of Stockholm Syndrome

[I have borrowed somewhat from my prior blog posts and my legal complaints for this piece, but I’ve added on, so to speak, based on recent events and I thought it might be helpful to have all the arguments in … Continue reading

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Today’s Tweets: #NotAPersonalAttack

@Sebelius Irony: Disrespect by #HHS unifies #MECFS community more than ever. Many call for Dr. Lee’s resignation. #NotAPersonalAttack @HHS_DrKoh Irony: Disrespect by #HHS unifies #MECFS community more than ever. Many call for Dr. Lee’s resignation. #NotAPersonalAttack I am very sick … Continue reading

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CFSAC Meeting Needs to be Rescheduled as a Two Full Day In-Person Meeting

[Update: Please email Dr. Lee with copies to Sebelius, Koh and Jones requesting that the meeting be rescheduled as a two full-day, in-person meeting: Nancy.Lee@hhs.gov Kathleen.Sebelius@hhs.gov howard.koh@hhs.gov Wanda.Jones@hhs.gov] Even the weather gods don’t agree with HHS’s cowardly decision to hold … Continue reading

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Sebelius “Responds” to the Experts: “You Mean This Is Not What You Wanted?”

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, … Continue reading

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