The story of a
devastating illness on film.
An independent filmaker and Harvard-educated PHD student,
Jennifer Brea, have been making noise with a new film about
CFS. The film has garnered attention from Good Morning
America, coinciding with efforts of the filmmakers to raise
money to produce and promote the film.
A trailer for the movie has been produced. It can be seen
Canary in Coal Mine Trailer
A kickstarter webpage has also been set up to take donations
and votes in support of the project.
(update 11/25/13) The kickstarter campaign was
successful in raising enough for this project.
With over 2500 people joining in the effort.
Will Sebelious respond
to the scientific community?
Recently, Dr. Kathleen Sebelious received an open letter
from 66 scientists and clinicians.
The letter pertained to a controversial IOM
(Institute of Medicine) contract signed by the US Health
Department (HHS) and sponsored by the HHS and Social
The letter, a demonstration of broad consensus by the
scientific community, is a response to the a recently
revealed process that had been moving forward secretly to
change the definitinon for CFS. The
IOM, which has little clinical expertise in CFS, will be
guided by leaders at the NIH. An earlier definition
developed by the IOM for Gulf War Illnesses was criticized
for rendering clinical distinctions irrelevant and
attempting to psychologize Gulf War Veterans. An
effort at a definition for CFS by the health department in
1992 -- the Fukuda definition --also has been widely criticized
for encouraging scientists and clinicians to see clinical
distinctions as obstacles to treatment and research, a view
widely espoused by Dr. Stephen Straus at the NIH.
Thus far, Sebelious has failed to respond to the
scientific community's input. After a
recent election in which Barrack Obama promised the health
department was going to be more responsive to CFS, many in the CFS community
feel the Health Department's CFS efforts post-election
represent significant steps backward, rather than progress.
Several CFS forum leaders have established subforums to
compile updates to the IOM contract issue.
Here Others in the CFS community have urged
the CFS community participate and give their input to the
health department, under the assumption that the health
department may be listening and very responsive to such
Best wishes to all,