Whatever happened to that investigation we requested after the last CFS Advisory Committee meeting? Good question.
You may recall that at the May 2013 CFSAC meeting, voting member Eileen Holderman alleged that she and two other members had been intimidated and threatened with expulsion from the Committee for expressing their views. On June 12th, I joined forty-five other organizations and individuals in requesting that the General Counsel of the Department of Health and Human Services undertake an investigation of those allegations.
On June 21st, the General Counsel referred the matter to the Office of the Assistant Secretary, which oversees the CFSAC. Since then? We haven’t heard word one. We’ve received no updates and no responses to inquiries. More than 90 days have passed since our original request, and less than 60 days remain until the November CFSAC meeting.
The importance of this really can’t be overstated. Two members are on record saying that they have been intimidated for expressing their views. The public can have no confidence in any deliberations or recommendations made by a federal advisory committee where members are being intimidated by the Designated Federal Officer.
As I have said from the very beginning, I do not know if the allegations are true. That’s why we requested an investigation: to find out. The best thing the Assistant Secretary can do is conduct a full and impartial investigation, and report his findings to the public. We have no way of knowing if that process is underway because no one is responding to our requests for information. All I need to hear is “we’re looking into it and will issue a report by such and such date.” I don’t think this is an unreasonable expectation.
Yesterday, Mary Dimmock made yet another request for information. This is the full text of her letter to Assistant Secretary Koh:
Dear Assistant Secretary Koh,
It has been more than 90 days since I asked General Counsel William Schultz to investigate whether the CFS Advisory Committee’s Designated Federal Officer Dr. Nancy Lee had intimated voting members of the Committee. Forty-six organizations and individuals joined me in that request, and expressed deep concern after the allegations of intimidation were made on the record at the May 23, 2013 CFSAC meeting.
General Counsel Shultz referred the matter to your office on or about June 21, 2013. I wrote to you on August 22, 2013, requesting an update on the status of the investigation. Neither you nor anyone from your office has responded to my inquiry.
The CFS Advisory Committee is scheduled to meet on November 12 and 13, 2013. If the allegations of intimidation are true, then the integrity and function of the Committee is materially impaired. No one can have confidence in an advisory committee that has been compromised by federal intimidation directed at minority or dissenting viewpoints. Failure to objectively investigate or take necessary action will similarly undermine public confidence in the transparency and accountability of the Committee and the Department.
Therefore, I once again request a written update from your office on the status of this investigation. If the investigation is completed, I request a written summary of the findings and any action that has been taken. Given the time sensitive nature of this investigation, I ask that you respond to me in writing by October 15, 2013. Thank you for your prompt attention to this matter.
Now we wait. Again.
Thanks for bringing this up. This is a critical issue and as you say goes to the heart of government credibility on ME. The IOM issue is important at the moment but this issue should not be forgotten.
Thanks to Mary for keeping on top of this.
Unbelievable.
When are slots for public testimony assigned? That would be a chance to bring this up at the meeting, by more than one person, if possible.
Our Government intimidating voting members of a Committee….Sounds a little bit like communism. Freedom of speech anyone.
Thanks Jennie for keeping us posted on everything. Thanks to Mary also!
“intimidated and threatened…Two members are on record saying that they have been intimidated for expressing their views. The public can have no confidence in any deliberations or recommendations…”
+ 1 for ~7-years now.
People who believe anything otherwise are simply naïve and/or out-of-touch with reality.
Just read Dr. Garth Nicolson’s book “Project Day Lily” — if you want to know what’s really going on.
The underlying problem that I see is that heterosexual, white people are the top of the political food chain. They don’t really have any idea what political oppression is, and don’t have much experience fighting for civil rights. Sadly, most CFSers’ don’t even realize that they’re oppressed. So, naively, patients keep turning back to government for help, when really the problem needs to be taken-to-the streets!
Project Daylily by Drs. Garth and Nancy Nicholson–just looked into the reviews on Amazon–looks like a very interesting book about Gulf War Syndrome and the scientific/political oppression and cover-ups surrounding GWS; very frightening that this travesty and conspiracy against ‘people’ goes on right under everyone’s noses–violating our human rights right here at home with devastating health/life consequences. In current news–chemical weapons are making headlines in Syria . . .
Let’s also get to the scientific truth that will expose the wrongdoings in ‘The War Against ME/CFS’—now—is that (The War) Against the Disease??–or–The War Against the People/Patient ME/CFS Community????–comprised of millions of people worldwide.
There is a real problem here; just does NOT make good sense–WHO is orchestrating this? WHAT is going on and WHY? Let’s get to the answers; the truth.
I blogged for several years about the horrific facts. My case goes up through the NIH, CDC, White House, WHO, to the UN. I testified federally in Washington-DC last year, and am published 18+ times on 4 continents.
IF YOU TAKE THE TIME TO UNDERSTAND GWS, YOU WILL UNDERSTAND CFS.
Thank you so much ‘lemonfoundation’ for providing us with this important information; the links/connections re understanding GWS and CFS—and all that you have done for the GWS community in necessarily standing up to get to the truth and the answers. I will order and read Project Daylily to learn more. May a return to good health and actively living our lives in all facets soon be upon us.
have anyone explored possibility of filing a class-action law suit against the DHHS & CDC for deliberately breaking the law on numerous occasions for several decades with regard to CFS/GWS?
The book’s complementary website is: http://projectdaylily.com/index.htm
Nicolson’s website is: http://www.immed.org
U.S. Government Recognizes Nicolson’s Work!: http://ncf-net.org/forum/nicholson.htm
I keep all these links, and 100’s more, on my blog. It’s not so much a blog, but 10+ years of research all warehoused in one location.
“THE PEOPLE UNITED WILL NEVER BE DEFEATED”
Be (as) well (as possible).
As a fellow advocate, I am certain you know that we must choose our battles in order to be effective and still deal with our own physical limitations.
As a patient, I thank you for your effortless work and keeping me apprised of the stagnant and unethical behavior of those in high places. It should come as no surprise that the NIH in collaboration with the CDC failed approve PEM studies. Follow up studies are necessary and there is plenty of credible evidence to suggest an autonomic nervous system effect of ME/CFS. What is it they are afraid to find?
One would think they didn’t want to get cut with their pants down once again. We were in hopes that a change in the CFSAC would be encouraging. I cannot thank you enough for keeping your fingers on the pulse of this hot debate.
As you put it, “Here we go again.”
Thank you for more info with these websites. As you are mentioning all the 10+ years of research–it serves to highlight what a full-time job it is (largely left to the individual) to strive to seek a return to a normal healthy active life that has been negated/stolen from us with these debilitating diseases of GWS and ME/CFS. @lemonfoundation