June
5, 2007
To:
Office of Proposal Management
The CDC has recently released the finding that 85% of the estimated
number of individuals in the U.S. with chronic fatigue syndrome- 4 million
of them – are not yet diagnosed. P.A.N.D.O.R.A. is very concerned
about this issue for two reasons.
1) The 15% of CFS patients who have been diagnosed don’t have
access to qualified and knowledgeable medical care and by the time they
find a physician willing to treat them, their capability of recovery
is gone (CDC- Bill Reeves). A good example is found in the state of
Florida where there iss only one CFS specialist treating her CFS patients
and the list is 2-3 years long for an appointment. The story is repeated
is every state in the U.S. These patients go on to experience serious
quality of life changes- loss of wages and jobs, no social services
support, and lack of disability systems that are supportive of their
medical plight. The disparities in their access to clinical care cut
across all social stratus but it is particularly worrisome for the CFS
patients who are of Hispanic and or African-American origin. (DePaul
University- Jason et al) It is important to mention that 4 out of 5
CFS patients are women.
2) The remaining 85% (according to the CDC) who is yet to be diagnosed
are also experiencing the same plight and it is compounded by the fact
that they don’t have a final diagnosis also leading to despair,
breakdown of the family unity, loss of wages, mental health issues,
and estimated as in the 15% group, in too many cases resulting in death
complicated by other health factors such as cancer, heart disease and
suicide. (DePaul University-Jason et al)
Simply put, chronic fatigue syndrome is an emerging illness that is
multi-systemic and has a wide array of symptoms that overlap with other
conditions including fibromyalgia, Gulf War syndrome and multiple chemical
sensitivities. It costs our economy based on an older demographic estimation
(800,000 – DePaul University- Jason et al) more than 9 billion
dollars a year in lost productivity, not including medical care and
disability benefits (CDC- Bill Reeves – www.cdc.gov/cfs
Therefore, P.A.N.D.O.R.A. is inquiring if funding for an outreach program
to find the individuals in the U.S. who haven’t been diagnosed
yet and to create a model for treatment for CFS patients would be something
that your foundation could fund?
If not under these parameters, what other parameters would a possibility
exist?
I look forward to your response. If you wish to speak with me by phone
I can be reached at 954-629-0976 (my cell phone) and or 954-783-6771.
The funding would be applied to a nationwide partnership of state organizations
who are cooperating in this project under the leadership of the Wisconsin
CFS Association.
In Good Health and In Beauty,
Marly C. Silverman
Founder
P.A.N.D.O.R.A. - Patient Alliance for Neuroendocrineimmune Disorders
Organization for Research and Advocacy, Inc. -Volunteer Help Line :
954-783-6771 - Fax: 954-785-9718
www. pandoranet.info
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