HHS + IOM =
Good News: Resistance is Not Futile!
We Will Not Be
Accomplices in ‘Harming Patient Care’
(or, Assimilate This!)
In the past few months, over
200 ME & CFS Experts and Advocates worldwide rightfully,
authoritatively asserted to government officials that failure by
the US Dept of Health and Human Services (HHS) to acknowledge
more recent and developing clinical definitions and research
consensus criteria “…will
significantly impede research and harm patient care.”
They did this for very good
reason, we believe. The consensus criteria cited (CCC; ICC) are
developed and endorsed by ME & CFS experts, independent of
historically and currently manipulative government health
agencies. An appropriate and justified move, given the history
and lack of meaningful change on the part of the government.
But US health agencies are
repeating history. They are harming patient care. Veterans of
this disease know the drill.
For at least the fourth time
on this trek,
with a disease they’ve historically badly misrepresented (much
to the harm of both patients and researchers), US health
agencies are attempting to again wrest control, this time over
consensus criteria by experts who have the rightful, appropriate
authority to write and endorsed these peer-reviewed criteria.
(Is it any wonder the international community as a whole views
the US government as arrogant and self-important?)
US health agencies are
wresting control - coercing submission yet again - over scores
of unsuspecting patients who embody these expert criteria. As
if government knows best.
With blatant disregard of
fervent protest from a majority of experts and patients who now
know better, at warp speed, HHS hired a no-bid National
Academies contractor (IOM) to cobble the government’s chosen
versions of several definitions with its own questionable CDC
Such an annexation would
consume unadulterated M.E. into a pool of vaguely defined,
multi-symptom, fatiguing illnesses, primary treatments being CBT
One might suggest this is
embellishing, speculation. Well, all one has to do is look at
IOM’s current understanding of “CFS” in their latest Gulf War
Illness work of impressionistic art. (Boy, is the proof
ever in THAT pudding!...)
(…See pp. 22, 29, 99, 203 in
for Chronic Multisymptom Illness (2013)”)
Many, many other failures of
this transaction from its questionable start to its shortcomings
revealed with selected bits of info stumbling clumsily out from
nameless sources, and resulting conflicts of interest, have been
addressed clearly here and elsewhere.
Resistance is Futile?
So, with little effort, the
massive HHS & IOM ‘Borg cube’ conveniently raise their shields
and bulldoze through a host of some 17 million battle-weary but
dedicated experts, advocates, seriously ill patients (most
impoverished and invisible) and overburdened caregivers from
around the planet on a suddenly-urgent, single-minded Mission.
The giants’ Mission: to
assimilate a patient cohort with an extraordinarily complex
disease into a “collective” of “drones” whose zombie-like state
is easily explained to nurse practitioners and busy GPs. (Making
quality of life better for whom?)
Envision the ME & CFS
Community, collateral damage, pebble-sized dark matter drifting
through space in thousands of small pieces in the wake trailing
these massive, self-important entities (HHS & IOM).
Oh, right. That’s not
science-fiction. That’s the past and current state of ME & CFS
patients and researchers from the government’s standpoint,
thanks to our community repeatedly bowing in subservience to HHS.
Outcome frighteningly predictable: relevant data rejection;
similar repeated past and recent experimentation using
frighteningly similar strategies.
Too late? We’ve established
that Mission’s pre-launch and launch has already harmed
patients. History repeats. (See
ICC Primer description of PENE, p.2 – it applies to all
patients who have over-exerted, repeatedly voicing their
concerns – needlessly, we feel, because this HHS-IOM blunder is
wholly unnecessary. Costly in far more than dollars.)
…Ah-hah, but what’s this?!
in our own solar system? Not light years away? Not even 18
months away? Boldly going where… well… we expected to go
without a $1M contract involving non-experts? “Immune
Abnormalities in Patients Meeting New Diagnostic Criteria for
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis”
Resistance is not futile!
No Surprises in This
Well-Known Corner of the Universe
ME & CFS experts and their
supporting advocates also affirm, “Worse,
this effort threatens to move ME/CFS science backward by
engaging non-experts in the development of a case definition for
a complex disease about which they are not knowledgeable.”
No surprise: A panel chosen
by unknowns, alien to this disease – the majority of this panel
are non- ME/CFS experts – has been announced. And, sadly,
supported by an ill-advised few, disengaging many.
A few of our respected
experts have, curiously, agreed to serve on this panel. Even
ones who said they were opposed to this endeavor. Though we
support and are eternally grateful for the exceptional work they
have done for ME & cfs patients, we do not support their
participation in this unapproved ‘study’… unless it is their
goal to nullify it, if based on nothing else but the very nature
of its inception. Ideally, they will confirm that no ME/CFS
experts will agree to participate, invalidating the ‘study’.
As Sure As There Are
Stars In The Sky
ME & CFS community members by
the thousands all over the planet have raised historically
inaudible voices in resounding support of their experts’
statements. They mince no words.
So if it isn’t already clear
as the Universe is deep: By virtue of the resounding
affirmations of the worldwide ME & CFS community,
Alliance for Myalgic Encephalomyelitis stands fast (despite
exacerbated orthostatic intolerance) and
refuses to acknowledge
the HHS initiated IOM ‘study’. We will not provide input. We
reject it as illegitimate. We do not recognize the committee as
a whole as standing for M.E.
By the nature of its backroom
creation, objected to almost unanimously by the very community
it is supposed to be serving, using our tax dollars, we deem any
outcome of this ‘study’ invalid – unless the outcome is swift
termination of the contract, based on many valid objections
already voiced and formally submitted to authorities.
To cooperate with this
‘study’ in any way is to validate it. Some may believe
“resistance is futile.” But we will not be assimilated. We
will not be accomplices in ‘harming patient care’.
We will not enable ‘moving
the science backward’; we will not time-travel back into the
hands of the very same main-stream medical establishment that
has vaporized ME, assimilated it into the “’CFS’ Fatigue
Collective”, harming severely ill patients for nearly 30 years.
We urge the ME & CFS
community, professional and non-professional, to stand fast and
invalidate this ‘study’ by refusing to cooperate in any way.
(It’s easy for anyone with
light hypersensitivity to ignore that bright red brain-searing
font, the threatening countdown, and tempting “Feedback” button
at the bottom of the IOM committee page. In reality, the
science-fiction there will not incinerate your computer or your
brain if you just ignore it.)
HHS & IOM –
FAQs & Fiction
Holidays! Engage… in something fun!
"We are the Borg. Your
biological and technological distinctiveness will be added to
our own. Resistance is futile."
(Footnote: For non-Trekkies,