Thursday, October 10, 2013

Clearing the Air, or Breaking Wind?

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Onward Through the Fog


Clearing the Air, or Breaking Wind?

A Comment on Suzanne Vernon


You can sign the petition in
support of the doctors' letter
HERE. You can sign the
petition to support adoption
of the CCC HERE:


Yesterday, Suzanne Vernon posted an
article on Research First
( in which she
attempted to respond to accusations
( that the CFIDS
Association of America (CAA) had
pressured the signatories of the HHS
doctors' letter (
into withdrawing their support for the
immediate adoption of the Canadian
Consensus Criteria and rejection of
the IOM contract.

Although the letter sent by the CAA
did not directly ask the doctors to
rescind their signatures, it was clear
that asking if they "still agreed" was
intended to instill doubt. (Not to
mention, why send an email to all of
the signatories, unless the purpose is
to get them to change their minds?)

The letter worked in at least one case:

Lucinda Bateman
( withdrew her name from
the letter, stating that:

"This is an opportunity to build a strong federal
base of support from NIH/IOM."

Echoing that sentiment.

Or perhaps inspiring it, Vernon says:

"We must have the cooperation and
involvement of the various federal agencies to
increase research funding and achieve real

What is lacking from these pronouncements of
faith in the IOM's ability to validate and fund
future research:

"based on clear identification of gaps in our
knowledge, review of our current evidence
base, and creative thinking about how to move
forward" is any *contact with reality*.

Philosopher George Santayana is reputed to
have said, "Those who cannot learn from
history are doomed to repeat it."

History, in the case of ME/CFS, has proven that
our federal agencies (HHS, CDC, NIH) have
absolutely no interest in accurately defining the
illness, funding research, or including patients in
decision-making processes - much less
"creative thinking about how to move forward."

Let's take a brief look at the history of how
federal agencies have dealt with ME/CFS:

*) The CDC has never tried to come up with
an accurate case definition.

The current CDC case definition ("Fukuda") has
been critiqued for decades by all of the
reputable ME/CFS specialists and researchers
as being too vague.

This vagueness was intentional.

The Fukuda definition was designed to stymie
the ability of physicians to correctly diagnose
the illness, ultimately leading to
under- eporting.

This was a boon to insurance companies, which
did not want to pay for yet another expensive
epidemic (i.e. AIDS).

It was not until advocates began pressuring HHS
to adopt the Canadian Consensus Criteria -
which were developed by independent
researchers and ME/CFS doctors - that the
HHS responded.

Their response was to ignore the experts, and
assign the case definition to people who not
only know nothing about the illness, but have a
vested interest making sure the definition stays
vague and broad enough to classify ME/CFS as
a form of "fatigue."

*) The NIH has never funded this illness.

It is well known that the funds awarded to
studying "CFS" in the 1980s were diverted to
measles, alcoholism and other "fatiguing"

That trend has continued. In 2009
(, nothing was
awarded for research into "CFS."

In 2010, again - not one penny. In 2011, $6
million was awarded, which, while better than
nothing, did not even come close to
researching an illness that affects more people
than AIDS ($3 billion), lung cancer ($233
million) and breast cancer ($800 million)

Does the CAA really believe that because of the
IOM contract the NIH is going to turn around
and award $4 billion to research on ME/CFS?

(I can hear the laughter, but strictly by
prevalence, $4 billion is what we should get

*) The HHS has never included patients in
their decisions regarding ME/CFS.

Patients were not consulted to formulate the
Fukuda definition. We were not consulted when
awarding funds for research.

We certainly weren't consulted about the IOM

The idea that we are now going to be "at the
table" is simply ludicrous.

I suspect that by making this claim Vernon is
referring to her own dinner invitation.

In spite of the fact that Vernon's expertise with
the illness in no way compares to that of any of
the people who stood by their signatures, she
will be part of the team that determines our


For one thing, her previous work with the CDC
not only supported the Fukuda definition
[Chronic Fatigue Syndrome – A clinically
empirical approach to its definition and study
(], but advocated
the use of questionnaires for diagnosis, rather
than objective measurements.

It is not at all surprising that, given her
predilections, Vernon does not consider PEM
(post-exertional malaise) as a hallmark
symptom of ME/CFS.

(She also believes that if we slept more we
would be "less tired.")

With Vernon on the IOM committee we can
expect no less than a definition that essentially
eliminates ME/CFS as a disease entity.

Why on earth would anybody - given this
30-year history - think that the IOM (an
organization that has already stated it believes
ME/CFS is a subcategory of "fatiguing
illnesses") will open up federal doors?

Why would funding suddenly flow for "fatigue"?

And why would research be more valid with
cohorts composed of people with "chronic

But, perhaps most important of all, why did the
CAA it use its clout as a national CFIDS
organization to pressure doctors into supporting
the IOM contract, an arrangement that will
benefit nobody in the ME/CFS community?

Does the CAA speak for the ME/CFS
community, or is it simply speaking for

PEM, NOT Chronic Fatigue, is why patients
are bedridden, homebound, unemployed,
and unable to walk a block.