Wednesday, November 24, 2010

CDC's CFS Program Leadership Criticized

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Dedicated to research, education,
treatment and finding a cure fot ME/CFS



10th International IACFS/ME Conference
Translating Evidence into Practice

September 22-25, 2011
Crowne Plaza Hotel, Ottawa, Canada
Hosted by the National ME/FM Action
Network of Canada

IACFS/ME will begin accepting abstracts
for (a) oral presentations (b) poster
sessions; and (c) workshop proposals on
January 2, 2011.  Further information will
follow in December.


October 13, 2010

CDC/CFS Program
Leadership Criticized in
Public Testimony
Presented to the CFS
Advisory Committee

As president of the IACFS/ME, an
organization of over 500 biomedical and
behavioral professionals, I thank the CFS
Advisory Committee for this important
opportunity to present testimony.

Several weeks ago, the Centers for Disease
Control issued a job announcement for
Chief, Chronic Viral Diseases Branch.

This includes primary responsibility for the
direction and substance of the CFS research
program. The program contains the largest
single US budget for CFS research ($5

This is a critically important position that
can influence science, practice, and health
policy related to CFS.

As such, we need a highly qualified
individual to fill the position. According to
the head of the search committee at CDC,
several candidates will be recommended for
further consideration.

A new chief will probably be appointed in
the next several weeks.

Apart from the necessary scientific
credentials, I would like to excerpt a key
job requirement from the job

----The ability [of the candidate] to deal
effectively with the scientific community,…
national and international health-related
organizations, and the public at large.

This critical dimension of leadership has
been and still is lacking at the CFS program
at CDC.

To date, the leadership of the Chronic Viral
Diseases Branch has conveyed an attitude
of dismissal bordering on arrogance toward
the external scientific and professional

This attitude has generated mistrust and
skepticism of the CFS research program – a
mistrust which has been ongoing for the
past decade.

IACFS/ME would like to see the position of
Chief filled by someone who constructively
engages with the scientific community.

This important ability would preferably
include a shared vision of the direction of
biomedical research in CFS---

particularly in the challenging new domains
of retrovirology and molecular medicine.

These emerging areas of scientific inquiry
may lead to new models of intervention
that can offer hope and help for long
suffering CFS patients.

Overall, we need open communication with
the CDC/CFS program and fresh
perspectives from their leadership--the
qualities that could elevate this position to
one that is viewed with renewed respect
and credibility.

In keeping with the stated job
requirements for the Chief, Chronic
Viral Diseases Branch, IACFS/ME
recommends the following:

      1.   All candidates should be
      required to demonstrate their
      past experience and future
      potential to deal effectively with
      the external scientific community
      -- especially professional
      organizations which look to the
      CDC for enlightened leadership
      and scientific progress.

      2.   When appointed , the new
      Chief should post a statement of
      intent on the CDC website with
      the following objectives:

      -- to develop cooperative
      relationships with the external
      scientific community.

      -- to be open to external input in
      the planning and implementation
      of studies relevant to CFS.

      -- to publish detailed abstracts of
      their planned and ongoing CFS
      research in order to inform the
      scientific community and other

      3. The CFS program should
      schedule regular meetings with
      scientists and clinicians in order
      to develop productive
      relationships on research and
      clinical management issues.

      Such regular meetings were part
      of the CDC's 5 yr. research plan.
      It's now 18 months since the
      release of the 5 yr. plan and no
      such meeting has been held.

      4. Finally, the CDC should initiate
      an extramural grants program so
      that independent labs can
      generate innovative research that
      complements CDC-based studies.

These recommendations are consistent not
only with job requirements but also with
the Mission Statement of the CDC, which
first and foremost emphasizes collaboration
and partnerships to create the expertise,
information, and tools that communities
need to protect their health.

TheCDC mission also pledges to the
American people to treat all persons with
dignity, honesty, and respect.

In sum we ask that the candidate selected
to head the CFS program be prepared to act
in accordance with the CDC's own mission
statement as well as the job's
requirements: that is, to demonstrate the
important ability to deal effectively with
the scientific and professional

Thank you,

Fred Friedberg, PhD

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