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Good News: Resistance is Not Futile!
Dec 5, 2013

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 ‘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)”)

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?!  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

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, 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, see HHS & IOM – FAQs & Fiction

Happy Holidays!  Engage… in something fun!

Locutus (Lois) Ventura

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

(Footnote: For non-Trekkies, about Borg :-)


Jan 9, 2014
M.E. Advocate
Jeannette Burmeister
Files Federal Lawsuit Against HHS and NIH Relating to IOM “Study”!
Show your support for Jeannette

"I can’t imagine being on a committee for some disease I don’t know about.”
- Dr. Daniel Peterson -

Watch ME Advocate
Susan Kreutzer take a stand in D.C. for those who are unable to stand!

NAME-US.org's Actions to Support ME & CFS Experts on the HHS/IOM Contract Attempting to Redefine M.E.

Brief Overview
Sept 23, 2013

Dec 5, 2013
Good News: Resistance Not Futile!

November 18, 2013
FAQs & Fiction

"We Know IOM's Great, But What Are We?"

November 3, 2013

October 27, 2013

October 20, 2013
HHS / IOM Contract:  Fooled Us Once, Shame On You for Abusing the Disabled!

Sept 30, 2013
REPEAT: Heed Our Experts!

Sept 25, 2013
Heed Our Experts!

Sept 20, 2013
Time is of the Essence!

[Thanks to Twenty Years and Counting for the letter and kick!]

Nov 11, 2013
Call for Investigation by the Inspector General of the IOM’s Conflict of Interest With Respect to ME/CFS
by Jeannette Burmeister

Excellent intelligible editorial by Dr. Mary Schweitzer
Sept 16, 2013
Why CDC Must Use Two-day CPET Testing - And Specialists Must Define the Disease, Not Bureaucrats

Timeline of Events regarding the HHS/IOM Contract, thanks to
ME/CFS Forums

Please donate if you can:

"When you come down with an illness that has no end, it strips away that idea of a future." - Howard Bloom

From the upcoming documentary
in a Coal Mine

by Jennifer Brea


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