Wednesday, July 22, 2009

More on CDC and CFS

I hadn't planned to put this on CO-CURE, but the CDC's  latest and perhaps
greatest publication about CFS:

"Use of medications among people with chronic fatigue syndrome and healthy
persons: a population-based study of fatiguing illness in Georgia."

inspired me.

CFSAC  27th May, 2009

First, I would like to thank Dr Wanda Jones for finally making these meetings
accessible to those of us who are too ill to attend them.  It's a project that
we started working on in 2005 and ended up in the peculiar situation of the
Office of Civil Rights being in violation of our civil rights.  We are
delighted that Dr Jones was able to break the log-jam and ensure that those
who cannot attend are properly accommodated. We also thank Pandora for making
it plain that there are many who wanted to attend and benefit from the
meetings, but whose disability prevented them from doing so.

You will undoubtedly have heard that the definition of the illness which has
come to be known as chronic fatigue syndrome is too broad. It is. The
International Consensus Definition of '94 was a travesty. We were told that
broadening the 1988 definition would result in better research, a greater
likelihood that a cause of the illness would be discovered.  Fifteen years
later and we are far from seeing any indication that that assumption is
correct.  Those who got together for the consensus definition are still far
apart. Their opinions are as polarized as they were when they created that
research definition.

Which brings us to a question -­ why try to have a consensus definition at
all? Science is not about consensus; it's about finding truth. Science is not
democratic. If opinions vary as dramatically as they do re: CFS, there is no
point in trying to find a middle ground.

While one group continues to do fine research into biological processes which
cause our symptoms, the other steadfastly refuses to recognize that research.
Are they aware of it? Do they read it? Do they even attempt to disprove it?
No.  The latter group simply insists that CBT & graded exercise
effectively treat CFS, ­ but ask them to define CFS  and you will find that
they consider it a somatization disorder, F48 in the ICD-10. Some do admit
that there are cases which even their treatments do not work. Subtle
innuendo - ­those confounding patients do not want to get better.  No
consensus; flat out disagreement as to the nature of the disease.

A particularly offensive, and oft used explanation for wanting to stay ill is
"secondary gain". Anyone with a passing familiarity with Taoisim will realize
that that philosophy posits that there is some good to be found in any
circumstance. Q.E.D. there has to be some secondary gain.  Many learn
from illness. "Tuesdays with Morrie" makes that plain. But does that mean that
Morrie wanted to have Lou Gerhig's disease to enrich but shorten his life?

Attempting to come to a consensus between two opposing groups was a mistake
and is at best questionable scientific method.  Science has nothing to do with
a democratic vote.

The failure of the '94 criteria has led the CDC, which has decided to broaden
the definition further.  This is outrageous.  One of the principals in the CBT
& GET School, Judith Prins, already shortened the '94 criteria in her
writings. Using a little footnote she acknowledged that she had eviscerated
the '94 criteria. Yet in subsequent writings she referred to that previous
paper's version of the '94 criteria.

No. It's time to adopt the Canadian Criteria, which at least is written by
clinicians who have long dealt with those suffering from the malady once known
as myalgic encephalomyelitis.  The further one gets from actual case studies,
the further one gets from finding a way to ease suffering.  It is
unacceptable for one group of theoreticians to ignore replicable scientific
studies and be considered the equal of those who approach the illness
scientifically. Government money should be spent to replicate those studies as
the CDC program seems incapable of coming up with much useful on its
own.  And when I say replicate, please do­ replicate. Do not fund studies such
as the one done by Freeman, which used different methodology. The first blood
volume study used the CR51 method, whereas Freeman used Evans blue dye.

So please play fair. You are playing with a lot of lives and a great deal of

I am thrilled to finally be able to stand up long enough to shower. My
treatments? Neurontin, valcyte (no more HHV6), daily infusions of saline to
increase blood volume, amantadine, various supplements including B-12 and
weekly self-administered shots. I've even learned to access my port-a-cath. In
over three years I've not had an infection.  I did try CBT & graded exercise.
The CBT is a useful adjunctive therapy. The graded exercise ­and indeed the
exertion necessary to get to the CBT classes ­caused a relapse.

Jean Harrison
* * *
Thanks for making some good points, Jean!

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