entitled "Input on CDC CFS Strategic Research Plan". Among the "comments"
they said they received was one from the National CFIDS Foundation. That
was totally false. The National CFIDS Foundation never wrote, e-mailed,
called or contacted them in any way to comment on their 5 year plan for CFS
because the National CFIDS Foundation does not believe that the CDC, when
they now talk of "CFS" is addressing the same disease that our Foundation is
addressing. When we use the words, CFIDS (Chronic Fatigue and Immune
Dysfunction Syndrome), what we mean is Myalgic Encephalomyelitis (ME). The
newest diagnostic criteria of the CDC, we fully believe, does not address what
The National CFIDS Foundation continues to seek answers for. We fund
research that applies to patients who have ME but, since the CDC eliminated the
diagnostic criteria for ME, we have no choice but to continue to call it
CFIDS/ME and our researchers go by the original Fukuda criteria from 1994
when patient samples are needed and not the empirical diagnosis (2005) used by
that federal agency.
Although we contacted the webmaster of the CDC's website to tell him about
the erroneous inclusion of our organization, the only reply was one to ask
for the exact link, which we promptly provided. We have not heard from
them again and an attorney from our board will follow up with a letter to
address this and ask, again, that our Foundation's name be removed. No one
from our organization has had any contact with the CDC for many years nor do
we intend to except to rectify this false information put on their website.
Our organization does not believe that replacing the head of "CFS"
research with another will change their position or the direction in which they
have been going for many years.
We are grateful for the poster of the announcement on Co-Cure, Tom
Kindlon, that alerted us that our organization's name had been used erroneously.
Gail Kansky
President, National CFIDS Foundation, Inc.
103 Aletha Rd.
Needham, MA 02492-3931
781-449-3535
_http://www.NCF-NET.org_ (http://www.NCF-NET.org)
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