Education Project Equals Medical Treason
By Cheryl Tai, Robert Huntington, Mike Reynolds

    A joint education project is available in order to increase "understanding
of medical professionals," according to Terri Lupton, RN, an employee of
The CFIDS Association of America (CAA).  Instead, it is medical
recklessness that furthers misinformation in a crafty way by seemingly
trying to "educate."  The CAA joined The Centers for Disease Control and
Prevention (CDC) and Health Resources and Services Administration along
with an Illinois AHEC Program to write a self-study module entitled
"Chronic Fatigue Syndrome: A Diagnostic and Management Challenge"
aimed at the primary care provider.  To further lure the unsuspecting PCP
with misinformation, the curriculum offers continuing education credits.

    The project got underway, officially, in October of 2000 with thousands
of dollars given to the CAA to help it along and make sure that the CAA fell
within the federal's CDC misinformation arena.   In 2001, 55 core medical
professionals were trained in a two day session on how to teach their
colleagues about CFIDS. They, in turn, will help to "educate" a minimum of
40 more professionals each so that over 2,000 physicians will be educated
before the fall of this year.  Most medial professionals are obligated to
obtain continuing medical education credits (CMEs) annually so attending a
session will enable the physician to learn some misinformation about CFS
along with helping to fulfill the requirements of CMEs.  In addition, the
CAA gets to exhibit the material at medical meetings by setting up
educational booths where the misinformation can be spread further.  With
additional funding, the CAA is now producing an educational video to
spread this misinformation even further to physicians who do not have an
opportunity to attend a local training session or have internet access.

    An overview of CFS says the illness "is characterized by...multiple
nonspecific symptoms."  Actually, the symptoms can be quite specific, but
they mention only nonspecific ones such as headaches, sore throats, pain,
and cognition "complaints."  No mention of swollen lymph nodes or
low-grade fevers in the overview.  They must be too specific.  In the
overview, they also mention the fatigue found in "approximately a quarter
of all patients."  A quarter?  The last time we looked at the 1994 CDC
criteria, it mentioned fatigue first thing saying "A case of CFS is defined by
the presence of the following:  Clinically evaluated, unexplained, persistent
or relapsing chronic fatigue that is of new or definite onset."  But, by
leaving this optional, it further dilutes the definition so that a physician can
diagnose a patient without even the diluted 1994 criteria.  Result?  Further
dilution.    They go on to explain that the fatigue is "common to many
illnesses" but, instead of mentioning specific diseases that have fatigue, and
most do, they get to throw in "depression."
    Then they get into the "historical background" and say that "in the
mid-eighties (wrong!  try early 80's) several researchers noticed higher
levels of ...EBV" so it was called "chronic EBV!"  It was, actually, the
infamous Dr. Stephen Straus of the National Institutes of Health who coined
that name and then had to wipe egg of his face.  He did so by proclaiming
near and far that this was, quite obviously, a psychological illness and
continues with this to this day.

     But even Stephen Straus is not quite so quick to put out misinformation
and did a fairly laudable job compared with the CAA when he wrote a
chapter in Harrison's Principles of Internal Medicine (14th Ed.,
McGraw-Hill, 1998) on Chronic Fatigue Syndrome.  He uses "probably"
when the information can not be proven and admits, unlike the CAA/CDC,
that "outbreaks" have occurred and mentions Los Angeles County Hospital
(1934), Iceland (1948), London (1955) Punta Gorda, FL (1956), and Incline
village (1985), admitting it suggests an "infectious cause."  Straus'
contribution leaves a lot to be desired, but, when compared to the
CAA/CDC's effort, it looks good!

    The CAA/CDC say that "over the years, other names for CFS developed,
including epidemic neuromyasthenia, myalgic encephalomyelitis, postviral
fatigue syndrome and chronic fatigue and immune dysfunction syndrome."
Seems like they're suggesting that there was no 50 year history of ME and
that all those names came along when CFIDS did.  Uh-uh.  Only CFIDS
came along after a bevy of physicians coined the inappropriate name of
chronic fatigue syndrome.  They state that the committee "was selected
because a group of researchers believed a more specific name would be
misleading."  Wrong again!   What this committee was trying to accomplish
was apparent to several of those on the committee.  One, an infectious
disease specialist from Harvard Medical School, said "Is the intention to
create a new psychiatric classification?"  He, along with other members of
the committee, quit rather than sign on to the trivializing name.  While this
"education project" goes on to state that "the nation's Surgeon General, Dr.
David Satcher, has agreed that the term CFS is no longer appropriate," the
CAA has been the one enduring blockade to seeing this accomplished for

    The next section is on etiology where they list "possible causes."  Their
first sentence on "infectious agents" is a blatant lie:  "Research has
documented no clear association between an infectious agent and CFS."
Hogwash!  HHV6 has been implicated as one of the primary causes of CFS
and that work has been published in a peer-reviewed medical journal.  The
work has also been replicated and published.  Only the CDC could not
replicate the work and bungled the study, either purposely or ineptly.  The
other "possible causes" listed are all resulting mechanisms of the cause and
not the cause, including "immune system defects," "dysautonomias," and
"neuroendocrine dysfunction."  Under this last, another huge white lie is
told when they state "It is unclear if CFS patients have abnormal cortisol
levels."  In fact, the NIH tried to prove this was a mental illness by looking
for high levels of cortisol.  Instead, they found low or low-normal levels.
So they refused to publish!  The researcher, Dr. Mark Demitrack, left the
NIH and began the same study all over again at a private university medical
school.  Years later, when he submitted for publication, the NIH, to block
him, dusted off the old study and published it!  So it is, in fact, quite clear
"if CFS patients have abnormal cortisol defects" and the government proved
this well over a decade ago!  But there's more!  The "other possible causes"
include "affective disorders, deconditioning and other psychological...factors."
While they go on to say that "none of these have been shown sufficient to cause
the illness" they don't say that they don't have a part in them!
    While the government and the CAA fund research projects that have no
chance of finding a pathogenesis of the disease, this states that this "should
be a primary goal of biomedical research."  If they feel it should, why aren't
they funding serious endeavors into this instead of leaving the poor NCF all
alone in this arena?

    Now comes the really good part.  They go on to mention all the nasty
"myths" they can dredge up about this illness such as it's rare, it affects
mostly the white affluent, it's all in the head, etc.  Why even bring up such
nonsense if not to subconsciously reinforce it?  And one of these is that the
prevalence of children.  The NIH refused to fund Dr. Leonard Jason to go
on to study this.  After all, hadn't he done enough by showing the
prevalence figures of the CDC were so low after spending billions since the
early nineties?  But he still went on and did a study on kids and found that
the rate was about half of that in adults but rather even in gender.  But it
gets worse.  Not only do they caution that CFS may be incorrectly
diagnosed in children (and the leading pediatric expert has clearly stated
time and again how diagnosis is most important to this age group) but they
say "it is important to direct careful attention to family functioning to
identify and address underlying family problems or psychopathology that
may be contributing to symptoms."  Not only has the invalid and cruel label
of "Maunchausens-by-proxie" by unfairly put upon parents trying to get
help for their sick children, but this document quite obviously gives support
to this crime.

    Are there any good things in this?  Sure.  But why does there have to be
so many bad things that any person with the slightest bit of knowledge
understands how bad it is?  While they deny they know about cortisol
problems earlier, they later say there are "frequently replicated research the hypothalamic-pituitary-adrenal (HPA) axis."  Talk about
contradictory!  And they state that " not a progressive disease."
Well, at least they called it a disease.  But it IS progressive, albeit very
slowly.  Just ask the majority of the long-term patients!  And, of course,
they say that "cognitive-behavioral therapy has been shown to be helpful" in

    Then we have Drs. Nancy Klimas and Charles Lapp to show just how
complicit a physician can be when the government and the CAA (well,
that's redundant) twists your arm.  They say how to diagnose CFS but never
even mention a tender point exam initially "if arthritic complaints are
present" despite over 80% of CFS patients having fibromyalgia.  In fact,
these physicians suggest so little testing that if this packet is for the purpose
of making sure they patient never gets disability, it's reached its goal.  They
even say "The presence of severe objective muscle weakness, neurological
signs, or cardio-respiratory disease might indicate other conditions."  In
fact, they NCF offers papers showing all of these are part of CFS.  And tests
can prove it if the correct tests, some costing absolutely nothing, were
suggested!  Later they mention FMS and that it is a "closely related illness"
so why not initially?  And they say that Gulf War Illness is a recognized
condition, however, MCS remains "controversial."  Well, so does CFS,
thanks to this!

    So where to turn for more information?  Well, the CAA, of course, if you
want a "credible source!" And the American Fibromyalgia Syndrome
Association (guess we know who sold out, huh?) along with the National
Gulf War Resource Center, a federal group!  In fact, more of what they
recommend, such as "diet" is totally misinformation!  They say to refrain
from things such as "nicotine" yet one study found nicotine actually helped
(AACFS Conference in San Francisco, 1990's) with the cognition problems,
not that we're suggesting you take up smoking.  But no, zero, absolutely no
study ever said it was bad for CFS.

   They flip back and forth a lot.  They state "Exercise intolerance is
characteristic of CFS" but then Lapp and Klimas chime in on how to build
up your exercise duration.  And. of course, don't forget "counseling."
Actually, after reading this, we felt we needed "counseling" for the first
time to control our fury!  They tell you how to treat with antidepressants and
tell you that "orthostatic intolerance can be confirmed by tilt table testing"
while they ignore the late most famous expert on orthostatic intolerance, Dr.
David H. R. Streeten, and his admonishment that "people don't tilt!"  The
NCF has always offered his suggested on how to prove orthostatic
intolerance without a tilt table test and his text on this is still used in most
medical schools in this country.  And, since they don't want you to forget it,
they return to "depression is a common symptom in persons with CFS."
Where's the study to prove this?  We can cite many that has disproven it.
Can the CAA cite any to prove it?  Well, yes, they probably are thinking of
Straus' studies!

   Lest anybody come away thinking CFS could probably be a serious
illness, they again point out that "CFS is not terminal, but suicide is a choice
that some persons make with CFS..."  Wish they'd read our Memorial List
and see that the majority did not take their own lives but with garbage
around like this, more probably will.  And they say that"rehabilitation and
physical therapists" can help!
    The packet includes case histories with scattered laughs like the medical
history of "Brad" that explained "he reports a single episode of extra-marital
sex...he did not use a condom."  Huh?  And Lillia's history that states
"About 50% of CFS patients will suffer from a major depression at some
point during their illness."  Bulldookies!  One medical article found less
than 50% suffered from SECONDARY DEPRESSION  and look how they
misconstrue this.  Deplorable!

    They conclude by saying that "assessing abnormalities by a through
history and physica" is not unlike other illnesses, which is a sure way to
lose a disability case.  And, they say, "Rigorous research is being conducted
into its causes and treatment."  Well, they must have found out what we're
doing because it sure isn't being done by the federal government and we
include the CAA when referring to them.  With this type of help from the
CAA, who expects anything to change?  If the intent was to keep physicians
in the dark closets of medical knowledge regarding CFS (CFIDS/ME), it
accomplishes its goal and, to top it all off, the CAA now owns bragging
rights about it!  Do we hear a collective groan out there?

For further information or to request a copy, should they be willing to share
it, Terri Lupton, RN can be contacted at The CFIDS Association of
America, at 704-364-0016, ext. 112 or at .

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606