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September 2011
Blood Safety Working
Group Study Released
The Blood Safety Working Group results have been
released, and they are touted to put an end to a link
between CFS and retrovirus, XMRV. The
Wall Street Journal has a good writeup of the study, as
does the
New York Times.
A decision on allowing CFS patients to give blood will be
made in the coming weeks. People with CFS were
allowed to give blood until a recent decision in 2010 to
suspend donations from people with CFS. At that time
of the suspension,
the decision to suspend blood donations from donors with CFS
was attributed to the need to learn more about murine viruses
and their possible effects on humans.
Dr. Vivian Pinn
Retires; Dr. Dennis Mangan Steps Down
Dr. Vivian Pinn retired in early August, after running
the Office of Research for Women's Health (ORWH) at the
National Institutes of Health (NIH) for many
years. The ORWH housed the CFS program at the
National Institutes of Health for the last 10 years. I interviewed Dr. Pinn in 2005.
Dr. Dennis Mangan, who headed the CFS program under Dr.
Pinn, is also stepping down at the end of October, a move that was outed at
the IACFS conference in Ottawa. According
to Phoenix Rising's Cort Johnson, Mangan stepped down to
attend to family matters. During his short term, Dr.
Mangan enjoyed increased popularity in the CFS community for
his amiable personality, leadership role with the CFS State of the
Science Conference in April 2011, and his decision to use
the more popular term ME in some of the NIH's materials and
website.
'Father
of CFS Advocacy'
Retires
Some call John Herd the
'father of chronic
fatigue syndrome (CFS) advocacy'. Herd recently posted
his decision to his retire from CFS advocacy, citing the growing level of
division/rancor in the CFS community as
one factor in his decision.
Herd served as a patient
representative on the Health and Human Services Name Change
Working Group, as well as the Chronic Fatigue Syndrome
Advisory Committee.
New Criteria
Published
Citing numerous studies that have found current case
definitions for CFS do not capture a homogeneous group of
patients, a panel of experts for chronic fatigue syndrome
has released new research criteria for CFS. The criteria, named the
Myalgic Encephalomyelitis
International Consensus
Criteria
will be published in the Journal of Internal Medicine. The
authors of the criteria boast over 400 years of collective
experience researching CFS and treating over 50,000
patients.
A short summary of the criteria is available on the CFS
Report.
HERE
Rivka Solomon's Play
Performed by Missouri State Students
Playwright Rivka Solomon's play about the costs of
chronic fatigue syndrome was performed by theater students
at Missouri State University. The play delivers a
hard-hitting social commentary of the personal and public
cost of CFS.
Best wishes to all,
Craig Maupin
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