Monday, December 9, 2013

We Will Not Be Accomplices in ‘Harming Patient Care’ (or, Assimilate This!)

(Permission to repost in full)

National Alliance for Myalgic Encephalomyelitis
Dec 5, 2013

We Will Not Be Accomplices in 'Harming Patient Care'
(or, Assimilate This!)

1) 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, 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.

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. (Is it any wonder the international
community as a whole views the US government as arrogant and
self-important?)

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 'current research'.

Such an annexation would consume unadulterated M.E. into a pool of
vaguely defined, multi-symptom, fatiguing illnesses, primary treatments
being CBT and GET.

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 "Treatment for Chronic Multisymptom Illness
(2013)" http://books.nap.edu/catalog.php?record_id=13539 )

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 elsewhere.

Resistance is Futile?

2) 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, but what's this, right 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"

http://tinyurl.com/n6y9ump

Resistance is not futile!

No Surprises Here

3) 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

4) 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, National
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.)

For more fictional fun, see HHS & IOM – FAQs & Fiction
http://name-us.org/AdvocacyPages/HHS_IOM_FAQs_FICTION.htm

Happy Holidays! Engage… in something fun!

Locutus Ventura
www.name-us.org

"We are the Borg. Your biological and technological distinctiveness will
be added to our own. Resistance is futile."

(Footnote:For non-Trekkies, about Borg:
http://en.wikipedia.org/wiki/Borg_%28Star_Trek%29 :-)