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An Update on CFS Committee Nominations by Judith Fleet Wisdom |
In late February, Donna Dean, Ph.D., of the DHHS, asked us to submit
nominations for various standing and ad hoc committees concerned with our
illness. Most of us saw this as a promising sign, since we are so weary of
the government ignoring us, dismissing our illness, misrepresenting it as a
reaction to stress (psyco-social in etiology), "diverting" funds intended
for CFS research, treating just one or two established nonconstituency-based
groups as fully representative of our interests when, instead, they
represent just one position, and one many of us feel has hurt our cause.
And, in the matter of looking to scientific expertise, the government health
sector looks to people like Simon Wesseley and Steven Straus as
representative of the science being done on CFS, and the type of science
that needs to be done, or the science that desperately needs more government
support to make critical and exciting headway.
We responded to Dr. Dean's request for nominations, though how many of us
responded is not known to us, since she didn't do the expected next and
proper thing: she dropped us and didn't make any attempt to inform of us of
how many nominations she received; what the process would be to move the
nominations to "elections" or "selections;" or provide us with information on
when the committees would meet and begin working on our behalf.
It was not hard, at this point, to start feeling we were getting the same run
around and dismissal that has characterized much of how the government health
sector has treated our disease, and, by consequence, us.
But some of us didn't give up. Independently people wrote her to ask for
the information she should have supplied us with independently, without our
inquiries or proddings. When I myself noticed that so much time had passed
and that I had heard nothing (later than others), I, naively, assumed that
she surely must have submitted a response, and I'd missed it. So I inquired
of others. And what I found out was that no one who wrote inquiries to her
had received a response.
I was appalled. How could this happen again? Especially after the CDC was
caught having "diverted" funds earmarked for research into CFS. Especially
when the so-called State of the Science meeting organized by David Morens
was such a misrepresentation of the ACTUAL state of the science going on in
this country and abroad vis a vis CFS. The plans for that conference missed
the mark so widely that it didn't even show evidence of an effort to PRETEND
to being responsible, representative or accurate. It seemed like a show
conference, a pretense, an offering that we'd fall for , be ignorant enought
to treat as evidence that they are NOW going to take us seriously.
So I decided to write Dr. Dean. But I had no illusions that my letter would
be treated differently than those of my colleagues. Why should it? The
whole purpose of my letter was more to act as an article, summarizing and
relating her failure to follow up on the nominations, with her ignoring
individual inquiries , with so much that's happened and not happened at the
hands of the governmental health bureaucracies, whose DUTY it is to do
responsible, serious, scientific investigations of different sorts
(epidemiological, clinical, laboratory) on CFS, and to educate more
physicians so we could get decent care by doctors who know what there is to
know about this disease. And as an article, it should be made public.
Before making it public I did however, fax it to her office, using my fax
machine. On my letterhead and on the fax cover were my home address, my
phone number, my fax number, and my email address. She had no problem
replying to me, if she so chose. My first mode of going public with it was
to have it placed on my web page, and announce it was there on CO-CURE.
One has to suspect, in light of her knowing it came from me and not CO-CURE
and that I was not a spokesperson for any group, that her effort to reply to
my letter was because I made it public. I don't know this to be true but the
facts point in that direction. For which she doesn't get very good marks.
Nor does she for how she replied. Nor for not even showing the routine
courtesy of cc'ing me. That is very routine and Dr. Dean couldn't possibly
not know that and be in her position.
What she did was "reply" to CO-CURE, apparently not realizing, as I'm told
happens with some frequency with people reading posts on CO-CURE (and
remember my letter wasn't on CO-CURE, but announced there, and sent to her
from my home, which she knew) that they hit the reply button, not realizing
that you can't reply to CO-CURE--it is a list of announcements, information,
statements by various authors. And if you want to reply to the author, their
email address is provided on the CO-CURE post. And if you want to post
follow-up information so that it will appear on CO-CURE, you submit it , like
we all do, to the CO-CURE staff, and if approved, it will appear.
I'm told that Dr. Dean was apprised of this as everyone is who makes this
understandable error. However, I've seen nothing of hers appear
subsequently, meaning that she's in a position to know that her "reply"
didn't get out to the CO-CURE reading public. Maybe she didn't even make an
attempt when she was informed of how to accomplish that, and that the reply
button won't do it.
I, however, was sent her "reply." That's part of what CO-CURE does
routinely, also. That I place the word "reply" in quotation marks in the
first sentence here, is because I have a hard time, on several counts,
treating what she said, which apparently she intended as being a reply, as
one..
Here's what she wrote (not directed to anyone):
Her two sentences were also obscure on top of being dismissive. I had to
re-read it several times before I understood it. I couldn't figure out what
"respondents" meant. Finally, I came to assume that it referred to those of
us who sent in nominations. But even if I'm right, to respond just to the
"respondents" showed disregard for giving us the feedback we all need and
want. She provided not even a cursory apology for the delay. Again, that's
routine in situations like this. Absolutely routine. But warranted.
In this, she showed little evidence of recognizing that we are sick, too sick
to rush and get nominations in, especially given the limit of two weeks she
gave us I believe. Many were too sick, tired, overwhelmed by all that we
must do held up against the energy we have to do what we must. Too busy
running to doctors, etc., to send the nominations in so quickly. If she is
working with this illness it is imperative for her to know this and
incorporate it into how she works. That is hardly too much to ask, though
much of what we have asked for or needed seems to be too much for many in the
government health sector to muster the imagination and courtesy to produce
and incorporate. Not to mention being self-starters. They aren't there with
the expectation that we act as their secretaries and advisors. Though we
surely should have some legitimate and working advisory capacity of impact.
For these reasons alone, and I could enumerate more, her reply doesn't merit
that categorization--the use of the word "reply." Instead, her sentences are
just more evidence that an official of the government CFS health bureaucracy
felt that such an attempt WOULD and SHOULD and COULD be treated as a serious
reply to our serious issues. It cannot and was not. We may be ill. We may
be poor. But we are not ignorant or wet behind the ears or born yesterday.
We've gotten advanced degrees at the COLLEGE OF HARD KNOCKS, as do so many
with illnesses that are brutal and dismissed.
WORSE than that non-repoy, or just more of the same, is that there hasn't
been a peep from her since!. No "simultaneous" responding to those
respondents she spoke of.
Someone asked me to write her again, since I'm the only one who got her to
type a few words in response to the letter or the letter being made public,.
But I decided not to. She shouldn't require further remindings. And she's
given plenty of evidence of not caring to keep us informed or a part of
what's happening. She's charged with doing a job, paid I presume
adequately, or more than adequately, certainly more than we are paid by
federal disability , to live on while we work very hard managing a very
difficult illness.
It is therefore, my decision, and one I'd like people to consider joining me
in, to write to members of the Senate and House. And tell them what's going
on, about Dean and other related matters.
I've already begun. They need to know how Dr. Dean, following Morens, has
handled matters. Or not handled them. They need to know that her agency is
the same sector of the government out of which diversions were produced, out
of which Steven Straus and others have continued to fail to follow up
important scientific leads on our disease and instead are weaving tales at
the level of Elaine Showalter's medical acumen. They , our national
legislators, need to find out what the GAO is doing and not doing. And they
need to find out far more about the NIH than has come out publicly. Or why
the government hasn't made attempts to locate us; i.e., find patients in
different parts of the country and do intensive interviews with a sample that
would represent different subsets of the illness and different subsets of
circumstances that being so ill engenders, including the emerging information
that we are more prone to get other medical conditions, like osteoporosis (a
very serious disease), and many are living with horrendous financial stress
of the sort that makes caring for ourselves, preventing further decline, near
impossible.
I've written some senators and plan to write to more. It isn't easy when
you're sick and overloaded. But with a computer it's doable. You are free
to quote parts or reprint the whole letter I posted on my website if you wish
to.. The important thing is to have people who hold pursestrings, who don't
like to have their constituents disregarded by paid personnel in the
government, who take pride, some of them, in being vociferous and vigorous
defenders of oppressed groups, especially, again, if the oppressors are
people they pay by saying yes to the budgets of agencies like the CDC, the
NIH, etc.
I am not saying this is THE answer. Just one. We can't let what she's done
go unreported. Or unrelated to the rest of the mess. It is publicizing in a
way less dramatic, admittedly, than those hearings did , allowing Koplan his
excuses for not spending money allocated for CFS, on CFS. Some senators were
beguiled by Koplan. Some, Arlen Specter among them, were not, joining me (who
holds no pursestrings but does have a computer--is the "pen" mightier than
the pursestrings?), who felt Koplan should never have been allowed to
maintain the position he took--that as long as scientists decide that money
allocated for X is needed for Y it's just fine, AS LONG AS they report this
diversion to Congress. Bowing to scientists in this matter is being
irresponsible to the needs of the people suffering from a disease for which
research into X is essential. Mr. Specter got that. Many didn't.
WE have to apprise Mr. Specter of what more is going on that's of a piece
with that sort of slight-of-hand reasoning. This Donna Dean sequence I've
recounted, which leaves us with no progress, no hope that we will see
something of value happening, no hope that we won't have to take our precious
time prodding them to do what they should be doing. Routine work, really.
And such delays! Apprise him of what research has gone undone. What
continuuing education has been forgotten. And how patients' valuable
knowledge and input is treated.
A small but I think important bit of work for us to do.
Judith Wisdom
[ My Original Letter to Dr. Dean ]
April 9, 2000
The following was received after the above was written. It's inadequate,
very, late, not sent to as many patients as would be possible (which is why
I'm forwarding it here, since it MUST get to all patients). I'm sure
discussions will procede on most lists, evaluating it.
Note that her list is not one that allows any of its members to know each
other or communicate with each other, just Dr. Dean. Control and witholding
is not the way to turn things around but to extend what has been for too
long. It loses the chance for getting the valuable input from those of us
who have fought so hard and long to make the government responsive to CFS,
to be creative and responsible. This post from Dean moves me NOT one whit
to change my evaluation of things.
1. Under the auspices of the Department of Health and Human Services
Chronic Fatigue Syndrome Coordinating Committee (DHHS CFSCC), the
planning
workgroup has commenced its work for the fall science meeting. Members
of
the planning workgroup have been chosen and they are: Dr. Anthony
Komaroff,
chair; Dr. David Bell, Ms. Pat Blankenship, Dr. Leonard Jason, Ms. K.
Kimberly Kenney, Dr. Nancy G. Klimas, Ms. Janet Montgomery, and Mr.
Jonathan
B. Sterling, with federal representatives Dr. Donna Dean of the DHHS
CFSCC
and Dr. Patrick McNeilly of the Office of the Surgeon General, DHHS.
Dr.
Komaroff, Ms. Kenney, Dr. Klimas, Ms. Montgomery, and Mr. Sterling are
members of the DHHS CFSCC and were designated to serve on the planning
workgroup by Dr. Nicole Lurie, Principal Deputy Assistant Secretary for
Health, DHHS, at the last coordinating committee meeting on February 8.
The remaining members of the planning workgroup were chosen by the DHHS
CFS
representatives in consultation with Dr. Dean and with the Surgeon
General's office, from the suggestions of individuals submitted by
February
29 to Dr. Dean. The planning workgroup is addressing its task via
telephone conferences. The meeting date and location in the Washington,
DC
area have not yet been set for the fall science meeting, although plans
are
to have the science meeting immediately preceding the fall meeting of the
DHHS CFS CC.
Ms. Pat Blankenship invites advocates to join her at the eGroups list
named
"me-activism" if you have ideas that you wish her to bring to the
planning
workgroup.
2. The next DHHS CFS Coordinating Committee meeting is scheduled for
July
12 at the HHH Building, Room 800, Washington, DC. The meeting will have
as
its sole agenda item a discussion of the forthcoming GAO report on CFS at
CDC and NIH.
"I have received your [sic] letter both by email and by fax
yesterday. I am planning a response to the queries regarding the science
planning conference that can be sent to the respondents simulataneously
rather than one by one."
April 8, 2000
wisdomjf@aol.com
Welcome to the new listserv CMMFDC-L, which has been established as the
"Department of Health and Human Services Chronic Fatigue Syndrome
Coordinating Committee information posting list to interested individuals
and organizations in the Federal, public and private sector." All of
you who receive this posting directly from CMMFDC-L have recently
corresponded with the DHHS on various topics, or have participated in
recent
activities related to the DHHS CFS Coordinating Committee. The listserv
is
resident on the National Institutes of Health computer and will be
managed
by Dr. Donna Dean, currently Co-Chair of the DHHS CFSCC, as a means of
providing information directly to those who are interested in receiving
such
information. Hitting your REPLY button should return a response to
this
sender, not to the entire subscriber list. Two announcements follow.
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Copyright © 2000 Judith Fleet Wisdom