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U.S. Centers for Disease Control
States that M.E. and CFS
Are Not The Same Illness
So, what is CDC doing
for M.E. patients?
The following correspondences
between ME advocate Steven Du Pre, CDC Director Dr. Julie
Gerberding and Steven’s Congressperson, Senator Feinstein, reveal
that the CDC views M.E. and CFS as two disparate entities that
warrant differentiation studies. Yet CDC makes NO
suggestion that they plan to fund or implement such studies, much
less recognize ME in the US.
The correspondences took place between August 2004 - November
2005. The PDF files of the replies
from CDC are scans of the original documents signed by CDC
Director Gerberding. Not only does Dr. Gerberding
refer to M.E. and CFS as separate entities, but she also attempts
to dodge providing credible answers to serious questions with
unfounded rhetoric.
But don't take it from us -
read for yourself:
1. Aug. 11, 2004 - M.E. advocate Steven Du Pre's initial contact
and requests to Dr. Julie Gerberding, Director of the U.S. Centers
for Disease Control.
2. Oct. 6, 2004 - Dr. Gerberding's reply to Steven.
3. Jan. 2, 2005 - Steven's rebuttal to Dr. Gerberding's
inaccuracies.
4. Oct. 12, 2005 - Dr. Gerberding's response to Sen. Feinstein's
request for her to address the issues of her constituent, Steven
Du Pre.
5. Nov. 5, 2005 - Steven's further plea to Senator Feinstein for
Dr. Gerberding to adequately address his concerns in writing.
(This request remains unanswered.)
So, if the reader studies Dr.
Gerberding's short replies to Mr. Du Pre's requests, one can
glean several other CDC points of view regarding M.E., some of
which we address in short below, and many of which--as you will
note in his rebuttal letters-- Mr. Du Pre addressed in detail to
Dr. Gerberding and Senator Feinstein. And though he
unexpectedly captured in several contexts the bonus that CDC views
M.E. and CFS as separate illnesses, his basic requests
went unanswered.
Points of note in Dr.
Gerberding's first reply (Oct. 2004) to Mr. Du Pre:
1. CDC disregards
M.E.'s ICD classification, and states that M.E. falls into the
realm of "...illnesses derived from definitions that continue to
lack definitive objective bases."
Our comments: Advocates
know that CDC does not recognize M.E. in the U.S., as evidenced by
CDC's lack of definition and investigation, and by ignoring the
ICD code implemented for 40 years. The
Canadian Consensus
Document does NOT lack objectivity, is supported by 69
specific references, was written and edited by more than a dozen
experts worldwide, and is endorsed by international experts as the
current most useful guide for clinicians diagnosing and treating
M.E. and CFS patients. Detailed observations coupled with
later and more recent laboratory findings have been documented for
decades by respected researchers such as E.D. Acheson, John
Richardson, A. Melvin Ramsay, Dr. Byron Hyde and many others, in
direct contrast to Dr. Gerberding's statement.
2. CDC continues
to foist M.E. "...observations aside..." and "...classifications
aside...". Dr. Gerberding states, "...the many similarities
between the two states [M.E. and CFS] warrant studies that compare
individuals with each diagnosis using very specific criteria."
Our comments: If M.E. is not
recognized or diagnosed in the U.S., it is not only misleading of
Dr. Gerberding to infer that there are many (or any) patients in
the U.S. diagnosed with M.E., but also, if Dr. Gerberding purports
on the one hand that specific criteria must be used, and on the
other hand insists there are no definitive diagnoses, then how can
CDC expect to project sincerity when making a claim that studies
comparing M.E. and CFS are warranted? What is CDC doing to
define M.E. to help initiate these warranted studies?
Nothing that we're aware of.
3. Dr.
Gerberding states, "A component of ME that continues to elude
efforts to consider CFS as the same illness is the presence of
measurable neurological findings in individuals with classical M.E."
Our comments: We agree
with the CDC's statement that M.E. and CFS should not be
considered as the same illness! But we adamantly disagree
that there is any lack of measurable neurological findings in M.E.
Objective neurological findings are one of the main tools noted
M.E. researcher Dr. Byron
Hyde uses to differentiate M.E. from "CFS" and other illnesses
within his large international medical practice. Mr. Du Pre
also references several other documented findings in his Jan. 2005
rebuttal letter.
4. CDC claims
that the 2003 Canadian Consensus Document "... is plagued by the
primary shortcoming of all definitions by committee efforts:
a lack of irrefutable data...."
Our comments: Again, many
patients and researchers disagree that the
2003 Consensus Document
is lacking data. And we have
Ramsay's Definition,
The Nightingale
Definition of M.E., and over 3,000 research articles
(see ME Research UK database) to refute a claim of
"irrefutable data."
5. CDC is
spending the little funding it receives on CFS research (and
much of that funding is not being appropriately spent, as has been
recently reported), while completely disregarding the debilitating
disease, M.E. Dr. Gerberding makes this clear by completely
passing over any mention of M.E. in her final statement about
CDC's joint education effort with a CFS organization. We
also note that this education effort appears to target physical
therapists, nurse practitioners, and physician's assistants,
rather than the general practitioner, internist, specialist or
researcher.
Points of note in Dr.
Gerberding's second reply (Oct. 2005) to Sen. Feinstein:
1. Dr. Gerberding
reiterates many of the above statements in her Oct. 12, 2005 letter to
Sen. Feinstein, including that "...there are
a number of characteristics that differentiate ME from CFS...".
This statement makes a patient wonder what CDC thinks those
characteristics are and why CDC is being so secretive about them
while patients continue to lose their livelihoods and their lives
prematurely.
2. Dr. Gerberding
also states that, "Continuing education for clinicians and health
care workers may offer the best approach to ensuring the ME and
CFS patients receive appropriate medical care." Yet again she
goes on to say that CDC "has recently expanded its education and
outreach activities related to CFS...." No mention of M.E.
That was three years ago.
Here are just a few of the
many questions that CDC has yet to answer.
1. Why does CDC
recognize and fund CFS, acknowledge that there is a disease,
Myalgic Encephalomyelitis, that is similar yet different than CFS,
and yet CDC is not taking any steps to investigate and document
the differences between M.E. and CFS, if they purport such
differentiation is warranted?
2. Why isn’t there one
penny of government funding for M.E. research and education?
3. How are researchers
to determine the differences between M.E. and CFS when CDC won't
accept Ramsay’s definition, will not acknowledge the value of the
Canadian Definition, nor provide an updated research definition
based on Ramsay’s, Richardson’s, Dowsett’s, Hyde’s and others’
decades of observation and knowledge? |
