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Category Archives: Uncategorized
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
P2P FOIA Documents, Part 7—Collins, Murray and Maier: Trouble in NIH Paradise
David Murray’s (Director of NIH’s Office of Disease Prevention) noticing of a ProHealth blog entry started an avalanche of bizarre email exchanges within NIH that included, among others, Francis Collins, James Anderson and Larry Tabak. I received these emails after winning my … Continue reading
Posted in Uncategorized
Tagged Canadian Consensus Criteria, CCC, CFS, Chronic Fatigue Syndrome, David Murray, Francis Collins, Institute of Medicine, IOM, James Anderson, Larry Tabak, ME, ME/CFS, Myalgic Encephalomyelitis, Nancy Lee, NIH, P2P, Paris Watson, Pathways to Prevention, Susan Maier, Wilma Peterman Cross
50 Comments
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
Posted in Uncategorized
Tagged AHRQ, Beth Collins Sharp, CFS, Chronic Fatigue Syndrome, David Murray, Fasten your Seatbelts, FOIA, Francis Collins, Freedom of Information Act, HHS, Institute of Medicine, IOM, James Anderson, Mariela Shirley, ME, ME/CFS, Myalgic Encephalomyelitis, NIH, ORWH, P2P, Paris Watson, Pathways to Prevention, Susan Maier, Talking Points, TPs
25 Comments
P2P FOIA Documents, Part 5—ME/CFS P2P Violates NIH Rules, Woot Woot!
Starting in August of last, year, NIH went through the elaborate process of rebranding the program that had until then been known as the Evidence-based Methodology Workshop (“EbMW”). The new shiny brand that emerged after an enormous bureaucratic effort—whose necessity is less … Continue reading
Posted in Uncategorized
Tagged CFS, Chronic Fatigue Syndrome, Controversy, EbMW, Evidence-base, Fred Friedberg, ME, ME/CFS, Myalgic Encephalomyelitis, P2P, Paris Watson, Pathways to Preve, Rebranding, Susan Maier, Woot Woot
52 Comments
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
Posted in Uncategorized
Tagged Attorneys' Fees, Baker & McKenzie LLP, Burmeister, CFS, Chronic Fatigue Syndrome, FOIA, Freedom of Information Act, HHS, Institute of Medicine, IOM, Judge Vince Chhabria, ME, ME/CFS, Myalgic Encephalomyelitis, NIH, U.S. District Court for the Northern District of California, Unreasonable Conduct
54 Comments
P2P FOIA Documents, Part 4–NIH: Neither Patients Nor Science Meant to Be Part of P2P
The documents I am releasing today at this link relate to the P2P working group. I published some of them previously in my P2P FOIA Documents, Part 2: “We also recently had a FOIA request on CFS.” But to I thought t would … Continue reading
Posted in Uncategorized
Tagged Buzzfeed, CFS, Chronic Fatigue Syndrome, David Tuller, FOIA, Freedom of Information Act, ME, ME/CFS, Myalgic Encephalomyelitis, Oregon Health and Science University, OSHU, P2P, Paris Watson, Pathways to Prevention, Susan Maier, Suzanne Vernon, Working Group, Workshop
20 Comments
P2P FOIA Documents, Part 3—NIH Organizational Meeting: ME/CFS is a “Burden” for Patients
Here is another batch from the P2P documents NIH produced in response to my P2P FOIA request. These are documents relating to the P2P (then called the Evidence-based Methodology Workshop) organizational meeting. The meeting took place on February 19, 2013. It … Continue reading
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
Posted in Uncategorized
Tagged AHRQ, CFS, Dr. Francis Collins, Dr. Kronick, Galileo Galilei, HHS, Inquisition, Jury Model, ME, ME/CFS, Ms. Sylvia Burwell, NIH, P2P, Pathways to Prevention, Witchcraft Trials
15 Comments
P2P FOIA Documents, Part 2: “We also recently had a FOIA request on CFS”
I am continuing to release documents (this time, emails only) I received from HHS in response to my P2P FOIA request. A lot of these email exchanges will show clearly the disdain, condescension and hostility towards our community. They also … Continue reading
P2P FOIA Documents, Part 1
Earlier in the year, I filed a FOIA request with HHS for documents relating to the ME/CFS P2P. Although I received some fairly unremarkable and some heavily redacted documents a while ago, I received the vast majority of documents, which … Continue reading
Posted in Uncategorized
Tagged CFS, EbMW, FOIA, ME, ME/CFS, NIH, OSHU, P2P, Pathways to Prevention
15 Comments
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
Posted in Uncategorized
Tagged Canadian Consensus Criteria, CCC, CFS, Chronic Fatigue Syndrome, FOIA, HHS, Jury Model, ME, Myalgic Encephalomyelitis, NIH, P2P, Protest
13 Comments
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
Posted in Uncategorized
Tagged CFS, Chronic Fatigue Syndrome, Exhaustion of Administrative Remedies, FOIA, Freedom of Information Act, HHS, Improper Withholding of Documents, Institute of Medicine, IOM, ME, ME/CFS, Moot, Myalgic Encephalomyelitis, NIH, Summary Judgment, the case law says exactly the opposite of what counsel for the government represented at the hearing, Unreasonably narrow interpretation, US District Court for Northern District of California
72 Comments
My June 2014 CFSAC Testimony: Tribute to Eileen Holderman
First, I ‘d like to congratulate the newly appointed committee members. The patient community is particularly excited about the addition of Dr. Jose Montoya, a true ME/CFS expert with crucial clinical and research experience in our disease, something HHS committees … Continue reading
Let it Go, Dr. Koh: The Truth Never Bothered You Anyway
After watching “Frozen,” this line would not leave my head: Let it Go, Dr. Koh: The Truth Never Bothered You Anyway Of course, this is pure satire having a little fun at the government’s expense. So, here we go: … Continue reading
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
P2P Review Protocol: Still No Transparency
Today, what seems to be the Systematic Review Protocol for the Pathways to Prevention (“P2P”) was published online.The secrecy continues: The publication does not include the names of the technical experts and NIH refused to divulge those names in response to … Continue reading
Posted in Uncategorized
Tagged CFS, Chronic Fatigue Syndrome, ME, ME/CFS, Myalgic Encephalomyelitis, NIH, P2P, Pathways to Prevention, Systematic Review Protocol
9 Comments
Thunderclap to Oppose the IOM, Support the CCC: Let Our Voices be Heard Loud and Clear
The next IOM meeting will be held on May 5th and 6th. A whooping one fourth of the meeting is open to the public’s listening in. No public participation is allowed, except for comments by a few, hand select people. … Continue reading
Posted in Uncategorized
Tagged Institute of Medicine, IOM, IOM meeting May 5th 6th, Thundercap instructions, Thunderclap
30 Comments
Now You See It, Now You Don’t: HHS Covers Up Flawed IOM Contracting Procedure
In January of this year, I questioned the compliance of the IOM task order with the requirements of the NIH/NAS umbrella contract under which the task order was issued. I had found information on a website of the Office of … Continue reading
IOM-OCI-OIG … OMG!
[Update: 2014/05/28, OIG Fails to Investigate IOM Conflict of Interest & Tells ME/CFS Patients to Buzz Off] The organizational conflict of interest (OCI) of the Institute of Medicine (IOM) in the ME/CFS case-definition study is as obvious as it gets. The IOM, … Continue reading
Posted in Uncategorized
Tagged Case Defnition, CFS, Chronic Fatigue Syndrome, COI, Conflict of Interest, Diagnositic Criteria, Gulf War Illness, GWI, Impaired Objectivity, Inspector General, Institute of Medicine, IOM, ME, ME/CFS, Myalgic Encephalomyelitis, OIG, Organzational Conflict of Interest
13 Comments
Thoughts About M.E. 
IOM Meeting: Open? Participate At Your Own Risk
The third IOM meeting of the committee tasked with the development of a new case definition for ME/CFS will be held on May 5th and 6th, 2014. According to the IOM’s listserv message from yesterday, “[on the afternoon of May … Continue reading →