!!! BULLETIN !!!
For Immediate Action -
September-November 2013 !!!
Fifty veteran US and international ME & cfs
posted this unprecedented
Open Letter to the Honorable Kathleen Sebelius,
U.S. Secretary of Health
to adopt the current definition(s) of ME & cfs.
October 25, 2013
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
"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."
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,
single voices get lost in crowed government in-boxes.
[Open Letter in full, with complete list of
patients who have been disabled for decades by this
devastating disease need to see the field move forward and
there is no time to waste. We believe that our consensus
decision on a case definition for this disease will jump
start progress and lead to much more rapid advancement in
research and care for ME/CFS patients. We look forward to
this accelerated progress and stand ready to work with you
to increase scientific understanding of the pathophysiology
of this disease, educate medical professionals, develop more
effective treatments, and eventually find a cure."
Name-us.org calls on the US government to
follow our experts' lead.
We have requested replies from our elected and appointed
For more info on how the HHS/IOM contract can be stopped,
November 3, 2013 - IOM Contract CAN BE TERMINATED -
October 27, 2013 -
IOM Contract CAN BE TERMINATED