Tuesday, October 22, 2013

Stand with our Experts

[Permission to repost in full]

HHS / IOM Contract – Fooled Us Once, Shame On You for Abusing the Disabled!

The warp speed of this potential train wreck initiative whizzes light-years
faster than the majority of ME and cfs patients can think, much less move.
We're sure HHS & IOM know this.  (And so we continued to be abused.) Given
HHS's corruption of CFSAC's definition recommendation, we are certain the
HHS and its hired hand's giant brushing aside of the ME & cfs community's
outcry in solidarity with our veteran experts against this contract is
deliberately breakneck.  This is at least as haphazard as the original CDC
investigators who, in the guise of authority, bopped to Lake Tahoe and
literally took a hike instead of carefully examining very ill patients and
heeding the professionals who called on them for help.   (Anyone remember
THAT government effort?  You know - the one that obliviously redefined
life-robbing M.E. into the innocuous 30-year "cfs" disaster that has
permanently maimed or killed a lot of good, hardworking people, abuse that
continues to this day, and has been career nightmares for our dedicated
doctors and researchers too?  Let's not forget about "misappropriated"
(stolen) millions, other millions frittered on "CFS" branding campaigns, and
fixation on fatigue rather than on wide-ranging studies on cytokines, spinal
fluid proteins, organs infested with viruses, and…  well, you know - all
that list of grossly abnormal stuff researchers have documented in PWMEs
that's magically supposed to go away with CBT and GET.)

NO WAY - not again!  When a long list of lifelong experts state loud and
clear, "FOLLOW OUR LEAD" - with hoards of beaten-down, undead patients
cheering from their sick beds if they are able, only to be ignored yet
again - it would be really, really naive to think good science is happening,
rather than politics and backroom-ing all over again.  We will not allow
this to happen again!  Fool us once… we've suffered and died for 30 years,
strung along, fooled over and over.

Well, our money's on a more informed, outspoken generation of ME/cfs
advocates – patients and researchers alike!  Given its history with ME &
cfs, HHS has no right to hand a million-dollar hammer to their exclusively
chosen contractor to smash apart the pieces of the ME puzzle that have been
rapidly amalgamating with advances in technology - clues that these experts
have painstakingly pieced together for an entire generation.  We question
IOM's integrity for accepting this contract.  They apparently didn't bother
researching M.E.'s turbulent history before signing on.  (We don't need to
question HHS.  Their track record speaks volumes.)  HHS may have funds on a
scale that our researchers desperately need, but no amount of money gives
HHS the authority to define a disease they've historically misrepresented,
harming countless patients over decades.  Definitions belong to experts in
the field, authorities on the disease who have fought for nickels and dimes
to bring to light the disease processes wracking our bodies.  To reiterate
what we've said elsewhere regarding HHS and its departments regarding ME
(cfs):  History has shown repeatedly that stakeholder input is gratuitously
listened to with seeming sincerity, expert advice is solicited, then
promptly disregarded as preconceived plans move ahead (or not).  Fool us
twice (times ten, but we're cognitively impaired, so shame on you again, HHS
& IOM, for repeatedly exploiting the disabled).

To the HHS and its departments: Redeem yourselves and your predecessors for
the lives lost and still suffering, undead, from this disease!  Help, do not


In the mean time, think about the public apology you or your successors are
going to send out.  (Restitution is virtually impossible, unless by that
time reanimation is medically possible.)

Request for Legal Action [See Footnote below]

It is far beyond Name-us.org's scope and ability to set in motion legal
action to cancel the contract between HHS & IOM to redefine ME.  (We would
be right on that if we could!)  HHS could do it with the stroke of a pen, if
they chose to heed our experts' sagacious advice.

We hope (if not already in motion) ME & cfs experts can quickly organize
legal action against this political –  most certainly not scientific –
maneuver on the part of HHS/IOM.  Until we hear word of any initiation of
legal action to cancel this contract, http://www.name-us.org  has posted on
its homepage some email addresses of Congressmen and others.  To them you
can cc your support of the Open Letter to Secretary Sebelius, signed by 35
of our most respected ME & cfs experts:

https://dl.dropboxusercontent.com/u/89158245/Case%20Definition%20Letter%20Sept%2023%202013.pdf \

Also, we've linked to the excellent petitions our advocates (thank you all!)
have been circulating on this issue.  Please sign the petitions and act in
any other way you can.  Nothing is too small, even if it's just one or two
sentences to your Congressmen in support of the Open Letter.  Once upon a
time I had a friend who told me she called her Congressman on an issue, and
when following up later, he told her if he had only heard from at least one
other constituent on the matter, he would have taken action.  I try to
remember this lesson when writing seems too overwhelming with M.E.



Lois Ventura


National Alliance for Myalgic Encephalomyelitis


Footnote [Partial quote http://www.seidmanlaw.com/Contract-Terminations/ ,
emphasis added, and note that this firm represents the contractor!]:
"Terminations for Convenience: The following is from Paul J. Seidman and
David J. Seidman's "Maximizing Termination for Convenience Settlements/
Edition II - Part I," Briefing Papers No. 08-3, at 1-2, 10, February 2008:

"  The "Termination for Convenience of the Government" clause in a
Government contract conveys broad rights on the Government to terminate the
contract when termination is in the Government's interest. The Government
may cancel the contract simply because its needs change regardless of
contractor fault. In return for this privilege, the Government agrees to pay
the terminated contractor its incurred costs and certain continuing costs in
a traditional Government contract. Alternatively, in a contract for
commercial items or services under Federal Acquisition Regulation Part 12,
the Government agrees to pay the terminated contractor the percentage of
contract price reflecting the percentage of completion and charges resulting
from termination."

So let's get this thing cancelled, and not waste any more of our REAL
research money!

(For Tom)

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