Wednesday, June 17, 2009

Dr. Friedberg's Statement to CFSAC

The following is the statement that was presented
by Dr. Friedberg  (new President of the IACFS/ME) to
the HHS Chronic Fatigue Syndrome Advisory
Committee (CFSAC) on behalf of the organization.

Jill McLaughlin

To: Chronic Fatigue Syndrome Advisory Committee

Fred Friedberg, PhD
International Association for CFS/ME

Date: May 28, 2009

Re: International Association for CFS/ME's
Recommendations for the CDC's Five Year
Strategic Plan for CFS Research

As president of IACFS/ME, I would like to thank the
CFSAC for this opportunity to comment on the CDC's
5 year strategic plan for CFS research. The new
director at CDC has the opportunity to reinvigorate
CFS research, as well as reinstate CFS as a public
health priority, as emphasized by Dr. Julie Gerberding
at the November 2006 launch of the CDC's CFS public
awareness campaign.

Unfortunately, the CDC's draft five year strategic
research plan lacks sufficient substance and detail.
As such, the IACFS/ME is unable to directly respond
to or endorse this plan. Rather, we suggest a single
critical change in the CDC program:
That change is to make CFS a public health priority.

The IACFS/ME requests that the CDC declare CFS
a public health priority. To achieve this goal, the
CFS community needs strong and visionary new
leadership from the CDC, the recognized world
public health authority, to remove the enduring
stigma associated with being a patient. This
stigma and skepticism about the illness is also a
deterrent to those professionals who would
consider entering the field of CFS as researchers
or clinicians.

CDC's own epidemiologic studies have identified
more than a million CFS sufferers in the U.S. with
as many as 85% still undiagnosed. Further, the
CDC has indicated that CFS is a debilitating illness
with an annual economic impact of at least $9.1

Yet, CDC sponsors no prevention or clinical
treatment research
. This is a major concern given
these 3 points:

(1) the large number of severely ill and undiagnosed

(2) the inadequacy of current subjective diagnostic
criteria for CFS, and

(3) the absence of effective, evidence-based
treatment options.

We have put together 8 recommendations that
CDC can enact to make CFS a public health

1. The CDC needs to identify a CFS program leader
who is a progressive, open-minded, and dynamic
manager with a sense of urgency commensurate
with the pressing needs of the CFS community.

2. The CDC should undertake high profile public and
professional awareness campaigns to fully legitimize
the illness of CFS and reduce its stigma.

3. The CDC should support extramural research into
the pathophysiology of CFS in order to achieve the
critical goals of objective diagnosis and effective
treatment. Such efforts should eventuate in the
identification of biomarkers that will justify:
a.)  a new objective case definition; and b.) the
relabeling of CFS with a more appropriate and
credible name.

4. In the spirit of public resource sharing, the CDC
should make available research study protocols and
the epidemiologic, clinical and laboratory data from
all studies conducted by the CDC's CFS research
program since 1984.

5. The CDC should abandon its use of the empirical
case definition for CFS ( ) and
make a public statement in this regard. The
empirical case definition has been highly criticized
by expert CFS epidemiologists because it is overly
broad and based on subjectively determined criteria
( ).

6. The CDC should take a pro-active leadership
position by exploring its potential role in developing
an international clinical trials network in
collaboration with clinicians, private industry and
university-based researchers.

7. The CDC should partner with the IACFS/ME, the
only national and international professional
organization representing investigators and clinicians
to develop evidence-based diagnostic and treatment
guidelines for the management of CFS.

8. The CDC should work towards the implementation
of the CFSAC recommendations ( ).

We thank the CFSAC for this opportunity to comment
on the CDC's five year strategic plan. Both the CDC
and IACFS should work together to achieve our
mutual goals of establishing new evidence-based
research programs, improving clinical care, and
offering comprehensive healthcare provider
education. Our ultimate objectives are (a) to
eliminate the suffering caused by CFS and (b) to
work toward the eradication of this serious illness.

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