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NCF Report:  Breakthrough "Hidden" Finding in the CDC's Gene Profiling Study
by Alan Cocchetto   Copyright 2003

    The Centers for Disease Control recently published the results of their
study of CFS patients in work titled "Utility of the blood for gene expression
profiling and biomarker discovery in chronic fatigue syndrome" [1]. One of the authors,
Dr. William Reeves, heads up the CFS program at the CDC.

    Vitally important results, neither reported to the public by the CDC nor
reported upon by other CFIDS advocacy groups, surfaced several weeks ago when the
NCF finally received the publication from the medical journal Disease Markers. "It took
several months to get a copy of the journal article because college libraries had difficulty
in obtaining it for some reason!" exclaimed Gail Kansky, president of the NCF.

    In an interview in Smithsonian Magazine, Dr. Suzanne Vernon, head of the
CDC's gene expression program for CFS and lead author for the study, stated that using
gene expression profiling technology, the differences between CFS patients and controls
could be seen. Furthermore, she predicted that its utilization would make it a diagnostic
tool for CFS.

    However, the NCF's own medical advisors and scientific consultants felt
that the CDC failed to adequately inform CFS patients, the public, and the news
media about its most significant finding to date!

    Bluntly stated, the CDC ignored their own truths discovered by their own
research team! When the CDC examined age matched controls with all CFS cases, the
top gene being overexpressed was the Huntington's Disease protein, also
known as the HD protein. Since this protein was not expressed in controls
but was highly expressed in all CFS patients and this protein proved to
have the greatest statistical significance, why then has the CDC ignored
this scientific finding? Why hasn't the CDC raised the red flag? Why
hasn't the CFS patient community or CFS researchers been told? Why hasn't Dr. William
Reeves commented on this?

    Perhaps this is because of the following. The Huntington's Disease gene is used in the
identification of Huntington's disease [2]. This gene and its identification with
Huntington's Disease was first identified in 1993. Now, if CFS patients are expressing
this gene in a statistically significant way, then these two diseases are linked together in
some significant manner! This truth cannot be ignored nor can it be diluted no matter how
hard you try! Furthermore, no "spin" on this will change these basic facts!

    Huntington's Disease (HD) is a devastating, degenerative brain disorder for which
there is, at present, no effective treatment or cure. HD slowly diminishes the affected
individual's ability to walk, think, talk and reason. Eventually, the person with HD
becomes totally dependent upon others for his or her care. Huntington's Disease
profoundly affects the lives of entire families, emotionally, socially and economically [3].

    Early symptoms of Huntington's Disease may affect cognitive ability or
mobility and include depression, mood swings, forgetfulness, clumsiness,
involuntary twitching and lack of coordination. As the disease progresses, concentration
and short-term memory diminish and involuntary movements of the head, trunk and limbs
increase.  Walking, speaking and swallowing abilities deteriorate. Eventually the person
is unable to care for him or herself [3].

    While Huntington's Disease is a genetically based disorder responsible for
neurodegeneration, it is a disease associated with polyglutamine expansion. Huntington's
Disease is one of approximately ten diseases identified thus far with a polyglutamine
expansion component.

    The NCF believes that the CDC has purposefully downplayed this key scientific
finding due to the fact that CFS patients may have a "new" disease associated with a
polyglutamine expansion component that is responsible for neurologic as well as
cognitive impairment that has already been identified with these types of disorders.
Furthermore, the major implication here is that CFS patients would potentially have an
"acquired" Huntington's disease-like process occurring that is no doubt due to a yet
unidentified infectious agent.

    The NCF staffers and the scientists who we have contacted are excited by
this very important finding because it fits the evolving CFS disease model that
we have developed. We firmly believe this work is directly tied to the ciguatera epitope
finding and that other work in-progress, via the NCF's Research Grant Program, should
yield some major dividends in the near future. All of our research efforts are aimed
at scientifically clarifying what we have put together and expediting appropriate medical
treatments. The NCF is very committed in this regard and we will be reporting upon our
other research efforts in the months ahead. Look for the CDC's article on our website at
www.ncf-net.org.

References:
1. Utility of the blood for gene expression profiling and biomarker
discovery in chronic
fatigue syndrome; SD Vernon, ER Unger, IM Dimulescu, M Rajeevan, WC
Reeves;
Disease Markers 18 (2002): 193-199

2. A novel gene containing a trinucleotide repeat that is expanded and
unstable on
Huntington's disease chromosomes. The Huntington's Disease
Collaborative
Research Group; Cell 1993 Mar 26; 72(6): 971-983

3. Huntington's Disease Society of America; www.hdsa.org


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