Sunday, June 14, 2009

More CFSAC Testimony

Sorry this is getting on here rather late.  I feel that this is an
important piece of testimony to document.  Kathryn chose to bring the
CFSAC committee itself to the table for not taking the bull by the
horns.  I couldn't agree more.  Also, I want to thank Hillary Johnson
for her awesome "The Why" piece, and John Anderson for his excellent
followup.

Posted with permission - thank you Kathryn!:

My name is Kathryn Stephens.  I come here today with hope, but also with
trepidation, because this Committee has been worthless since it's
inception.

I have a List of "WHYs" today:

WHY has no one questioned  the CDCs (erroneous) demographics, which are
based on their (equally wrong), research criteria?

WHY do you and the CDC ignore the Canadian Criteria, and/or the WHO's
diagnostic code of 93.3; (REAL CFS, according to the 1994  criteria in
the U.S.,, is M.E., a Neurological condition.)

WHY have so many  Committee members (since its inception) been so
uninformed, so ignorant of the more than 3500 studies that have shown
serious abnormalities in so many PWCS? Why do you exist?

WHY has the International Association for CFS/ME correctly changed their
focus to ME, while you have not? Are you part of the CDC's further
denying and obscuring of the reality of CFS? Do you support their
"international focus"; (meaning, the UK 'S NICE guidelines?) Are you
even aware of those?

WHY has the CDC slyly been trying to copy the UK 's NICE guidelines,
which make this a psychosocial illness, and which proscribe CBT and GET,
when so many competent, published studies have shown that most of us are
exercise intolerant?

William Reeves must GO, and NOW, before MORE irreparable, possible
malpractice, harm has been done.

WHY, as a perfect example of how behind the research and understanding
of ME/CFS you and your "Related Federal Sites" are,
is this allowed?:
   The  AHRQ website is indicative of the problems inherent in the CDC's
hiding the true facts of this terrible disease:

Their website is dated Sept., 2001!

   (and apologetically makes this)

STATEMENT: "This evidence report has not been updated within the past
five years..."  Can you believe this?  WHY?

It goes on to say,  "...the validity of one case definition over another
is not well established" (and) "... there are NO clear biologic
markers...." (and) "NO effective treatments specific to CFS have been
identified."

These nine year old statements are STILL true today.  How can that
possibly happen?  What does the CDC ever investigate that is replicable
and valid? What has this Committee accomplished for our sick and dying
PWCs?

The site then have the audacity to

CONCLUDE:  "....although several therapies have been studied, potential
benefits, as well as harms, of most...are not well established" (and)
"behavioral therapies that emphasize increasing activity levels may
improve quality of life and function in some with CFS."  Most dedicated
researchers know these are damaging statements.

(The nine studies they reviewed did not have any patients who were too
sick to be included, and it was known, EVEN THEN,  that it is not
FATIGUE that is the problem, but neurological damage and RECOVERY from
(aerobic activities)

If "CFS" has no scientific basis, as the CDC claims, WHY should there
even be a CFS department at the CDC - which now includes traumatized
children, depressives, fatigue from dozens of causes, and only god knows
how many other inclusions.

This current program must go, and Mr. Reeves should be allowed to move
on to his new, competing interests at Emory.

LASTLY, and finally, WHY do I think this comment may be in vain, that
you will allow this horrible disease to be a psychosocial illness? 
Maybe because of past performances of this Committee?  Maybe a class
action lawsuit or a Congressional Inquiry will help you understand how
serious we are about ACTION NOW!

I will thank you when and if  informed and constructive action takes
place towards the concerns we (collectively) will have expressed here
today and tomorrow. 

We will ALL be thankful then.






1 comment:

vilke said...

You noted that Reeves should be allowed to go to his competing interests at Emory. Is that NOT a direct federal contracting "conflict of interest"? I thought so and sent emails and requests for investigations to the HHS Inspector General, the new subcommitee on Fed Contracting in Congress, Congressment Coburn's website, the head of the CDC, and the GAO. In essence, it does appear that Reeves is acting as a contractor to his own CDC contractors and being paid by them. He is an Adjunct in the Psych dept of the Mind-Body program. These are the folks helping the Reeves' idiots (his followers) to tag the CFIDS folks with all sorts of psychiatric problems and not the physical problems that have been well documented by resepected researchers and doctors worldwide.
We need to get rid of Reeves AND his followers at the CDC. Failing that, it would be best to see if CDC/CFIDS money isn't just done away with so that the CDC can no longer damage CFIDS research and validity.