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So lacking is government support, moral as well as financial, that the research community, including dedicated physicians such as Andreas Kogelnik of Mountain View, Calif., Daniel Peterson of Incline Village, Nev., and Derek Enlander of New York City, feel they have to raise funds privately to continue their work. Even celebrity virus hunter Ian Lipkin of Columbia University has abandoned hope of getting his seminal work funded by the NIH and has joined the researchers who have had to hold out begging bowls to the public to do their research. - See more at: http://www.whchronicle.com/2014/03/the-strange-case-of-the-nih-and-an-elusive-disease/#sthash.T20Sr5aw.dpuf
So lacking is government support, moral as well as financial, that the research community, including dedicated physicians such as Andreas Kogelnik of Mountain View, Calif., Daniel Peterson of Incline Village, Nev., and Derek Enlander of New York City, feel they have to raise funds privately to continue their work. Even celebrity virus hunter Ian Lipkin of Columbia University has abandoned hope of getting his seminal work funded by the NIH and has joined the researchers who have had to hold out begging bowls to the public to do their research. - See more at: http://www.whchronicle.com/2014/03/the-strange-case-of-the-nih-and-an-elusive-disease/#sthash.T20Sr5aw.dpuf
So lacking is government support, moral as well as financial, that the research community, including dedicated physicians such as Andreas Kogelnik of Mountain View, Calif., Daniel Peterson of Incline Village, Nev., and Derek Enlander of New York City, feel they have to raise funds privately to continue their work. Even celebrity virus hunter Ian Lipkin of Columbia University has abandoned hope of getting his seminal work funded by the NIH and has joined the researchers who have had to hold out begging bowls to the public to do their research. - See more at: http://www.whchronicle.com/2014/03/the-strange-case-of-the-nih-and-an-elusive-disease/#sthash.T20Sr5aw.dpuf
So lacking is government support, moral as well as financial, that the research community, including dedicated physicians such as Andreas Kogelnik of Mountain View, Calif., Daniel Peterson of Incline Village, Nev., and Derek Enlander of New York City, feel they have to raise funds privately to continue their work. Even celebrity virus hunter Ian Lipkin of Columbia University has abandoned hope of getting his seminal work funded by the NIH and has joined the researchers who have had to hold out begging bowls to the public to do their research. - See more at: http://www.whchronicle.com/2014/03/the-strange-case-of-the-nih-and-an-elusive-disease/#sthash.T20Sr5aw.dpuf

"So lacking is government support, moral as well as financial, that the research community, including dedicated physicians such as Andreas Kogelnik of Mountain View, Calif., Daniel Peterson of Incline Village, Nev., and Derek Enlander of New York City, feel they have to raise funds privately to continue their work.  Even celebrity virus hunter Ian Lipkin of Columbia University has abandoned hope of getting his seminal work funded by the NIH and has joined the researchers who have had to hold out begging bowls to the public to do their research."
-Llewellyn King, White House Chronicle

So lacking is government support, moral as well as financial, that the research community, including dedicated physicians such as Andreas Kogelnik of Mountain View, Calif., Daniel Peterson of Incline Village, Nev., and Derek Enlander of New York City, feel they have to raise funds privately to continue their work. Even celebrity virus hunter Ian Lipkin of Columbia University has abandoned hope of getting his seminal work funded by the NIH and has joined the researchers who have had to hold out begging bowls to the public to do their research. - See more at: http://www.whchronicle.com/2014/03/the-strange-case-of-the-nih-and-an-elusive-disease/#sthash.T20Sr5aw.dpuf

Due to patient  and researcher objection, NAME-US.org does not recognize the U.S. government's unilateral decision to recruit a panel of mostly non-ME & cfs experts for an unnecessary definition 'study' described on this page.

However, we DO recognize and are grateful for the quality, exciting research currently in progress by independent and collaborating groups.  Therefore we ask the ME & cfs community to redirect some of its attention to the amazing research groups working together to help patients, despite decades-long roadblocks from U.S. and other governments.  We can no longer expect government health agencies to provide even minimal support to our community, given the 30-year history of neglecting the crippling epidemic of M.E. in the US.

So please take a moment to review our "Ways to Help Futher Research" page, and support our ME & cfs researchers in any way you can.  Thanks!


On Jan 26-31, 2014
ME Advocate Susan Kreutzer returns to DC for more protests.
Join her if you can!
And
Bring your Outside Voices!

Want to Help in the IOM Fight? Sign This Petition!


!!! BULLETIN !!!
For Immediate Action
[Note: this action will continue until
the unauthorized IOM study to redefine M.E. is terminated.]

Fifty veteran US and international ME & cfs experts
posted this unprecedented
Open Letter to the Honorable Kathleen Sebelius, U.S. Secretary of Health
to adopt the current definition(s) of ME & cfs.
Updated October 25, 2013

Excerpts:

"We strongly urge the Department of Health and Human Services (HHS) to follow our lead by using the CCC as the sole case definition for ME/CFS in all of the Department’s activities related to this disease."

"In addition, we strongly urge you to abandon efforts to reach out to groups such as the Institute of Medicine (IOM) that lack the needed expertise to develop “clinical diagnostic criteria” for ME/CFS. Since the expert ME/CFS scientific and medical community has developed and adopted a case definition for research and clinical purposes, this effort is unnecessary and would waste scarce taxpayer funds that would be much better directed toward funding research on this disease.  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."

"The expert biomedical community will continue to refine and update the case definition as scientific knowledge advances; for example, this may include consideration of the 2011 ME International Consensus Criteria (Carruthers et al, Journal of Internal Medicine, 2011). As leading researchers and clinicians in the field, however, we are in agreement that there is sufficient evidence and experience to adopt the CCC now for research and clinical purposes, and that failure to do so will significantly impede research and harm patient care. This step will facilitate our efforts to define the biomarkers, which will be used to further refine the case definition in the future."

Name-Us.org would like to thank the writers and signatories of this letter.
We echo its message!
It's strength speaks volumes for many, many patients in the US and worldwide
who are too ill to speak for themselves,
or whose single voices get lost in crowed government in-boxes.
[Open Letter in full, with complete list of signatories]

----------------------------------

Name-us.org calls on the US government to follow our experts' lead.  We have requested replies from our elected and appointed officials.

 

How You Can Show Your Support today!

SIGN THESE PETITIONS

Stop the HHS-IOM contract and accept the CCC definition of M.E.
by Patricia C.

Thank our M.E. & cfs Experts - Show HHS You Support Our Experts' Position  by Mary Dimmock

You can also email, write or call your state Senators, State Representative, and recipients of the Open Letter, including the cc list of names at the bottom of the Letter (a few email addresses listed below; other contact info can be found online). Tell them you support the M.E. & cfs Experts' position for the HHS to cancel the wasteful and potentially harmful IOM contract, and to immediately adopt the Canadian Consensus Criteria to expedite M.E. research.  If possible, include or attach a copy of the Open Letter.
Kathleen.Sebelius@hhs.gov howard.koh@hhs.gov Tomfrieden@cdc.gov
collinsf@mail.nih.gov HELP Chairman Senator Tom Harkin cfsac@hhs.gov
President Obama Your State Senators Vice President Biden
  Your State Representative  

Any or all of the Senators on the Health, Education, Labor & Pensions Committee (HELP)

For more info on how the HHS/IOM contract can be stopped, see:

November 3, 2013 - IOM Contract CAN BE TERMINATED - Part 2

October 27, 2013 - IOM Contract CAN BE TERMINATED


--January 2, 2014 by Paradigm Change  -  New Letter Requesting Cancellation of HHS-IOM Contract and Signed by 197 Professionals and Advocates Sent to Secretary Sebelius


On December 10th and 11th, Susan Kreutzer brought the voices of ME & CFS patients from 50 states and 39 nations to Washington, D.C.

 

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

Comments to the IOM by Edward Burmeister

Lessons I learned from the end of a stick  by Erica Verrillo


ME Redefinition Battle in the NEWS

 

March 2014
Bold Evidence that US Health Officials have worked
to make ME & cfs "Evaporate"

See the complete commentary by Craig Maupin: CDC AND NIH Officials Discussed "Desirable Outcome" of Seeing A Distinct Illness "Evaporate”

Dr. Stephen E. Straus to Dr. Keiji Fukuda: “I predict that… the notion of a discrete form of fatiguing illness will evaporate. We would, then, be left with Chronic Fatigue that can be distinguished as Idiopathic or Secondary to an identifiable medical or psychiatric disorder. I consider this a desirable outcome.” “I commend you again on your efforts to forge an international consensus that has scientific merit and is politically acceptable.”
 

Mar 3, 2014  The Strange Case of the NIH and an Elusive Disease
-by Llewellyn King

Feb 8, 2014  CFS Patients War Against Controversial U.S. Health Research Plan
-by Penny Swift

Jan 27, 2014  How "Chronic Fatigue Syndrome" Obscures A Serious Illness
-by David Tuller

Dec 6, 2013  David & Goliath, or The Sick and The Bureaucracy
-by Llewellyn King

   

NAME-US.org would like to thank all the advocates and their proxies who sacrificed their health to make a statement in protest of the IOM 'study' at the January 27 public session! 
YOU ARE STRONG!


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


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


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
HHS + IOM = BORG
Good News: Resistance Not Futile!

November 18, 2013
HHS & IOM -
FAQs & Fiction

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

November 3, 2013
IOM Contract CAN BE TERMINATED - Part 2

October 27, 2013
IOM Contract CAN BE TERMINATED

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


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
Canary
in a Coal Mine

by Jennifer Brea


US Health Agencies Explained in Brief:

Department of Health and Human Services
(
HHS)
"The Department of Health and Human Services (HHS) is the United States government’s principal agency for protecting the health of all Americans and providing essential human services."

Brief descriptions of HHS' 11 Operating Divisions.

Some of these divisions we hear about often in ME & cfs Advocacy:  Centers for Disease Control (CDC); National Institutes for Health (NIH); Agency for Healthcare Research and Quality (AHRQ) ;Food and Drug Administration (FDA); Centers for Medicare and Medicaid Services (CMS); Health Resources and Services Administration (HRSA)

HHS Organizational Chart
 

A NAME-US exclusive!
CDC Official Dodges
M.E. Patients' Issues

"...there are a number of unique characteristics that differentiate ME from cfs...." -Dr. Julie Gerberding, former Director US Centers for Disease Control

 
 

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