Remember, everybody, that HHS is refusing to comply with the FOIA requests from patients (which is why a lawsuit was filed in federal court to enforce rights under the FOIA)? Because of that, we don’t know for sure what the NIH/NAS umbrella contact provides for. However, it appears that there is some (although little) information about that contract at this link, which talks about a standing contract between the NIH and the National Academies of Science, “which allows funding of the Academy activities to support the NIH mission.” It would seem likely that the IOM “study” falls under this umbrella contract.
Now, here is what’s peculiar about this find. One of the identified required “steps to using the contract” is to “[r]esolve all questions about the scope … of the activity.” [emphasis added] This is where it gets really interesting: The listserv message from the IOM of December 26, 2013 informed us that one of the objectives of the afternoon session of the January 27th/28th, 2014 IOM meeting, which is open to the public, is to “clarify the scope of the charge.” [emphasis added] In other words, the scope of the IOM “study” is not clear yet, despite that being a requirement under the NIH/NAS umbrella contract.
[Edit April 7, 2014: HHS has deleted the information referenced above in an apparent attempt to cover up their failure to comply with the requirements of the umbrella contract. For a discussion and an image of the information previously found at the above link, please see my blog entry from today here.]
Because of HHS’s secrecy surrounding this “study” and it’s refusal to provide the pertinent documents in a timely manner, in violation of federal law, we can only speculate, but I question whether the IOM task order to develop new diagnostic criteria for “ME/CFS” follows the umbrella contract’s requirements and if it doesn’t, whether the task order is legally valid and, thus, whether the “study” was validly commissioned.
Regarding the lawsuit I filed last week and for people who have been wondering: No, I am not litigious. I have only brought one lawsuit in my life and that was against the State of Berlin, Germany. I won.
Thoughts About M.E. 
You pose a most logical sequence of NEXT questions relating to this IoM contract debacle, Jeannette–maybe this is the NEXT order of business to pursue!!! I do NOT trust anything about this process of actions, inactions, governmental DISregard of the law–its own law, ridiculous NONsensical rules for comittee/panel ‘set-ups,’ etc., etc. re the HHS, NIH, IoM, P2P process/es–that are ‘SET UP’ to put us through the hoops.
We keep going back to the beginning–what I DO trust is the direction that the ME/CFS Experts and Researchers have led us in — and that is to adopt the CCC and NIX the IoM contract. THAT is the bottom line–simple–WHAT is the problem, HHS, NIH, IoM and P2P peeps ??
There is something verrry verrrry FISHY about ALL of this!! As to the lawsuit—my money is on YOU, Jeannette!!!!!
Thanks, Ess. It’s looking like my approach to litigation until now (my former reluctance to litigate) is taking a 180 degrees turn with this IOM contract. Enough is enough! Stay tuned!
P.S. In a $3 million dollar annual bugdet — which is NOTHING getting NOWHERE; let’s get REAL — a very poor ‘business decision’ to use over 1/3 of that on the IoM contract and ‘that’ which feeds into it. That recommended course of action to go with the CCC as advised by the ME/CFS experts and nixing the IoM contract would leave that precious, albeit meager, $1 million + for REPLICATING CURRENT BIOMEDICAL RESEARCH.
Just MORE ONGOING government WASTE of the 30 years and beyond in the MOST TRAGIC SAGA of ME/CFS lives–(government) continuing in the quest of KILLING precious time with the consequential results of the DESTRUCTION and KILLING of PRECIOUS LIVES–i.e., pw ME/CFS!!!!!!!
Excellent. It all gets clearer and clearer to me. Truth always feels good. Thanks Jeannette.
Thank you, Jeannette, for your continuing efforts on behalf of your fellow patients. You are speaking and acting on behalf of many of us who are too ill to do this work. Please know that your efforts are appreciated–and CHEERED!
Thank you Jeannette for clarifying the Machiavellian style of this so called redefinition plan.
Thank you Jeanette…..again!
I am not a lawyer but, how independent can NAS be from government, if they have a standing ‘agreement that NIH will fund future Academy activities’?
They basically have an ongoing contract where NIH can simply add new tasks to. NAS relies on this ongoing flow of funding from NIH. In what way can they be considered ‘independent’? It is basically like they are an ‘agency’ of NIH serving them continuously.
Dr. Nancy Lee stated at a CFSAC meeting that the government (HHS) is not in the business of defining disease. What do you call this?
you are, of course, right, Gabby! to claim that the IOM will be able to issue an unbiased report that is completely unaffected by the goals and instructions of HHS is ludicrous. they are not going to bite the hand that feeds them.
We’re all behind you Jeannette, if anyone can do it you can!!! Although we’re fighting a formidable foe (hell all we’re fighting for are basic human rights!), some historic act that gets the media attention could help the ME cause tremendously.
Great find, Jeannette! There’s a reason the NAS and other government contractors are referred to as the “other government” by Washington, DC insiders. In this case, the NAS’ IOM is simply being used to do the government’s dirty work under the guise of “independence”. It’s a shell game.
Thank you so much Jeanette for your continuing brilliance in staying on this.
Words fail–even imagination fails–to conjure what is and might be going on here. Shenanigans like these seem to be business as usual now in so many areas of life. In our case, it is life and death and cannot be tolerated.
A lawsuit against the State of Berlin. And you won! Well then, this should be a piece of cake. You go girl!
Ditto. Rooting for you!
and yes, berlin is a state as well as a city. a so-called “city state.”
Jeannette thank you for staying on top of this, we are behind you. The corruption that is enmeshed in every department of our government is unbelievable. They have taken advantage of such an ill group of people, they have done worse with veterans, so what can we expect. We are dealing with the mentality of Kathleen Sebielius saying “Some have to die” talking about a 12 year old girl who needed a lung transplant. If it wasnt for you keeping them somewhat in check, along with others who are able, they may have already closed the book on us. Your doing the right thing, and we support you. They cannot be trusted at face value, there is a reason they are trying to do these things in secret, and are not coming to the community to ask what we want. Power and Greed is what fuels their decisions. Cronies get contracts, ect. I think it was Dan Peterson that said ” Your going to have to march on Washington before they will do anything”.
Hi, Jeannette! I asked the NIH for info regarding the P2P and what researchers were gonna be on it, if any. I did receive an email that said I “may find it useful”. I didn’t, except that they did say “The expected outcome from the IOM study is a set of recommendations for clinical diagnostic criteria for ME/CFS. The intended audience is health providers, patients, and caregivers — not researchers.” Would you like a copy of the email I got? I’m not sure if it would help or not. I’ll check back here later to see if you want it!
Thanks for all your good work!
CC
CC, I would love to get a copy of the email. I’ll email you.
Okey dokey!
It seems an appropriate time to restate as has been posted on Phoenix Rising and quoted below:
http://phoenixrising.me/archives/19618#comments
“alex3619 September 24, 2013 at 3:37 pm
One strategy for silencing advocacy is to co-opt any willing advocates or organizations that are
threatening to create waves. You get their cooperation, offer small things in return, and continue with your agenda. It works for environmental advocacy, and a book was written about it I think, from the PR company that does this for a living.”
“Nielk September 24, 2013 at 3:48 pm
So it seems, Alex that HHS has read this book.”
Thank you, Alex. This is so true–when **SHARKS go hunting–they strategize for the best way to ‘get in’–then move in for the KILL!!!
If we take the bait–we get SWALLOWED up by the sharks . . . EYES WIDE OPEN — Beware!!!!
P.S. They may not actually be wearing their SHARK costume ‘on the surface’ 🙂
There is MORE THAN GOOD REASON that the ME/CFS Experts, Researchers and Advocates are taking the STRONG stance that they/we are !!!!!!! Let us keep that at the forefront of this MOST IMPORTANT MISSION of our very lives!!
Some food for thought: Under Federal Tort Claims Act, the government has waived sovereign immunity if a tortious act of a federal employee causes damage.
http://en.wikipedia.org/wiki/Sovereign_immunity_in_the_United_States
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