A Friend of the CFS
Community, Dr. Les Simpson, Passes
The CFS community lost one of its champions recently when
Dr. Les Simpson passed. Dr. Simpson, a
pathologist from New Zealand, worked on circulatory
abnormalities in ME and CFS long before such research became
commonplace. Having spoken and interacted with Dr.
Simpson, he was a class act and generous man in every way.
Les Simpson will be missed, but never forgotten.
Is the HHS Sticking
with CFS and Fukuda?
After the unexpected surprise that the IOM Report on CFS
was thorough and true to the science, attention shifted to
the HHS response to the report. The
response from the HHS -- or non-response --appears to
be a disappointment so far. Though the HHS
claims it is waiting for the release of the P2P report early
this summer, one can't help but wonder if some of the higher
ups at the health department simply see the IOM as a report
as a report best ignored. Opportunity lost
The World Health Organization recently made a splash with
a program to ensure names, terminology, and public policy
for diseases are sensitive to the populations they serve.
WHO Guidelines for protecting populations from harmful terms
The concept behind the program is a good idea, of
course, but I'll just be blunt and say I have a problem with
the bureaucrat chosen by the World Health Organization to
lead the effort -- Keiji Fukuda. While at the
CDC, Keiji Fukuda had every opportunity to put principles of
science and concern for the public into play when it become
clear Stephen Straus intended both the term "fatigue
syndrome" and the "Fukuda definition" to elimination
consideration of CFS as a serious and distinct disease. These goals were not a proper use of authority
then, and even worse, they were anti-science. Simply
put, my belief is Keiji Fukuda participated in the use of
public policy to steer scientific outcomes toward harsh
personal attributions that had taken root within the HHS
toward people with this illness.
The damage done and the HHS and Fukuda wasn't benign, and
that damage affects people with CFS/SEID/ME every single day
in numerous ways - -clinically, socially, financially, and
Personal attributions and intentions surface behind CFS term
I can't help but feel the person the WHO chose to
lead a program on "sensitive naming of illnesses" is a man who is trying to rewrite the history
of the decades of damage done to millions of sufferers of
one of the world's harshest diseases. And,
for this observer, such efforts are not effective, to say