http://oslersweb.com/sb/page.php?ID=74147&post=594304 OSLERSWEB.COM
Inside the Labyrinth
Down (and Out) in Atlanta
HILLARY JOHNSON
April 28, 2009
Tags: CDC Seeks Input, Five More Years?
Five More years?
The Centers for Disease Control intends to stay in
the "CFS" business for another five years in case
anyone was wondering.
Yesterday afternoon, on Monday, April 27, the
agency held a four-hour group therapy session for
people who have suffered so in the Reeves Era.
The agency has created a five year strategic plan.
Yup. Using the Internet, agency staff put out the
word: they sought "input" on this plan from citizens.
The notice came suddenly last week. People wanted
more time to prepare for the event. The agency was
accommodating, extending its deadline to send in
comments until May 1, or Thursday. But, swine flu or
no swine flu, they stuck to their guns on the matter
of holding the public meeting in Atlanta yesterday.
As it turned out, the all-afternoon call-in fest was
remarkable in myriad ways. I hadn't expected to be
so profoundly affected by it.
In my long memory,
it was the first time I have seen
agency staff leave themselves quite so vulnerable.
There was no filter between government staff and
the public, some members of whom arrived in person
to participate in the four hour session in Auditorium
B2 of the CDC's Global Communications Center. One
couple flew all the way from Texas to make their
brief comments, for instance; the wife, ill, the
husband, healthy.
The agency provided a freebie telephone line for
everyone else to dial up. Thus, one had the option of
listening to the proceedings in the comfort of home
while, say, scanning the front page of the New York
Times, or to actually participate and hear one's voice
piped into the auditorium. It was all very high tech
and nicely worked out.
The sole ground rule in this entire affair had to do
with the number of minutes people were given to go
full tilt at the agency: five. Due to what may have
been an unexpected short-fall in the number of
people who chose to participate-thirty-two by my
count--and the generous four-hour time allowance,
however, organizers allowed that rule to fall by the
wayside. Numerous people managed to pop back into
the proceedings a second time in order to continue
their original train of thought or make additional
points.
The afternoon unfolded into a luxurious
expanse of time, in fact, and left the battered
agency asking, at the end, rather
masochistically-"Anyone else?" And in the brief
moment of silence that followed, one sensed a
collective feeling of peace, perhaps the first in a
quarter century. Everyone who wanted to speak their
mind had been accommodated, whether it was to
simply "bring home the hurt" caused by CDC policies,
as one man said, or to plead for the involvement of
outside scientists, or to demand that Bill Reeves be
removed ASAP.
The language coming from the floor and the common
phone line was often riveting, always thoughtful and,
for the ensuing four hours, it never really let up.
CDC staff arranged for a very sweet lady named
Becky to moderate, no doubt to defang any vitriolic
detractors. Becky had a lovely "thank you" for
everyone who called, no matter their disposition or
rank, no matter how irate their statements.
I had planned to merely listen, but eventually talk of
decades of life lost and minds wasted got my blood
pounding, and I found myself pushing the star key on
my phone. Presto-magic, I was in the queue and
then quickly on the line. Given its monstrous history
in this disease, I said,
"The CDC needs to make a
formal apology to every American citizen with this
disease, and recuse itself from the further study of
this disease." I heard a tiny smattering of applause
and imagined more than a few rolling their eyes.
"Thank you," Becky said, sounding a little sad. To
the tender-hearted Becky, I say, "And thank you!"
Acting CDC director Richard Besser was busy with
swine flu on Monday so the agency sent the head of
the National Center for Zoonotic, Vector-Borne &
Enteric Diseases, Lonnie King, in his stead. King is a
veterinarian and, more interestingly, the boss of Bill
Reeves. Also present was Stephen Monroe, who
heads the division of viral and rickettsial diseases.
For those of a sentimental bent, Monroe's division
was the long-ago workplace of Gary Holmes--of the
famous "Holmes" criteria of '88. It was also the
workplace of Keiji Fukuda--of the famous "Fukuda"
criteria of '94.
Fukuda is now the deputy general director of the
World Health Organization. Who says "CFS" ruins
careers?
The afternoon began with a rather superfluous if
breathless update on the state of the swine flu
outbreak. CDC staff have been preparing quite
literally for years for such a flu pandemic and should
cases in the U.S. become either more virulent or
common, it's one public health crisis where the
agency might actually score a win, something it
badly needs in these days of unruly U.S. senators
making inquiries into the CDC's spending sprees and
slamming even its ability to prevent and control
disease.
Apparently, I wasn't the only one who found irony in
the flu update.
"You have declared swine flu a public health
emergency. With four million cases of CFS, what
does it take to have it declared a public emergency?"
was Kim McCleary's surprising zinger. Go Kim!
Lonnie King began his welcome patter by noting that
two years ago, a CDC staffer had written an account
of her "CFS" for an in-house publication, an account
that he seemed to have found heart wrenching.
"One of our CDC employees came forward," King
began somberly.
He certainly got the diction right, since we all know
admitting to having "CFS" is analogous to coming out
of the closet, and many who care about their
reputations and their livelihoods, if they are lucky
enough to have either, will prefer to stay in. As a
patient in the auditorium noted eventually,
"Having
CFS is like having AIDS in the 1980s. You don't want
to tell anyone. There's an immediate response that
you're psychologically unbalanced."
And what federal agency, far, far away from the
Capitol and way down in Atlanta, Georgia may have
played a role in that phenomenon?
At King's mention of a CDC staffer-one of their
own!-spelling out in black and white the nature of
her suffering for agency scientists to read, I was
reminded of my visits to the CDC in the late 1980s. I
discovered then that literally hundreds of letters
from people with "CFS" were pouring into the agency
by the day. These letters collected in boxes in
corridors like so much trash before they were thrown
out. Some of them were ten or more pages long,
handwritten on legal pads. They read like small
novels.
And the letters were complemented by frantic,
terrified phone calls from patients that came in
'round the clock. I met a secretary at the agency
whose job description included wrangling a telephone
answering machine that collected these phone calls
that poured in overnight. I was incredulous, but she
insisted that at least one-hundred or more calls
came in during the wee hours-every night. "These
people stay up late," she added. And that was
twenty years ago.
So, Dr. King, I say, Cry your crocodile tears of sympathy, but unless you somehow discovered a mere two years ago that this disease is a nightmare, I remain unconvinced.
Very quickly, agency honchos sat down to listen and
the real business of the afternoon began.
Immunologist Nancy Klimas complained about the
fuzzy strategic plan, which had exactly four
points-things like "laboratory research" and
"Educational Intervention Research."
If there were themes during the afternoon, this was
one of them: zero details.
"Three of these [four] don't look like research goals,"
said McClearly, who seems to have morphed into
Robocop in the last few months. I like the new vibe.
"Your outline-it's so devoid of specifics," added
Jennifer Spotila, a colleague of McCleary's. "What is
the priority order? What funding has been identified?
What are the milestones for performance? How will
you engage extramural researchers? How exactly do
you propose to develop an international consensus
on CFS? I could go on-your outline could have been
written two years ago-or ten."
And to that, I'll add twenty.
Marly Silverman of Pandora offered one of the most
jam-packed and specific counters to the agency's de
minimus five year plan, proposing that the SSA
develop a mechanism to track denial and approval
rates for "CFS" claims, for instance, and that the CDC
"enhance the program of medical providers [doctors,
for the rest of us] to include specialists in neurology,
endocrinology, dentistry, mitochondrial disease," and
more. "We see flaws in studies of defined
populations," Silverman hammered away. "[Create]
provider-based patient registries, with online patient
self-reporting. Cross reference it with patient medical
providers.Send CDC teams to patient providers.
We
also suggest visiting these patients at home. The
most difficult cases of CFS-these patients are
bedbound and homebound."
Ahh-great suggestions--even if Pandora may be too
generously crediting CDC staff with the ability to
diagnose a case. But, while floating in the Blue Sky
reality offered by the Centers for Disease Control,
why not ask for the moon? Go for it.
Another theme, no surprise, was suffering.
"I've already lost my twenties-I don't want to lose
my thirties," said the young woman from Texas.
Said her husband, "You will be saving marriages"--if
agency scientists could find a cure.
Another woman took up the cry: "There is an urgency
to this matter. I have lost my thirties, my forties and
my fifties-I don't want to lose my sixties.My
daughter has this disease. If my seven year old
grandson gets this, my heart will break into a
thousand pieces.There are many people out there
holding on day by day."
To which one can only say, Amen, sister.
"In the past, CDC has ignored us, lied to us-I just
want to really bring home the hurt," said one caller
who spoke in a halting, choked voice. "I remember a
couple of years into it. I was in my car, writing a
suicide note. I only didn't do it because I thought
about my kids." After which, there was silence while
he composed himself. "I want you to think long and
hard." he added.
"Thank you," Becky said after waiting a decent
interval.
Not surprisingly, over the course of the afternoon the
tone moved from sophisticated criticsm, to hurt and,
eventually, to barely suppressed rage. If CDC had
any motives other than to solicit "input" on their
slap-dash five year plan, then allowing the steam to
rush out of the pressure cooker must have been
among them, and that is what happened.
From the even-tempered, watchful Craig Maupin, who
misses nothing: "Reeves has worked diligently with
the military on stress research. His passion for stress
research is commendable. He should follow his
passion." And this from a veteran of the disease: "For twenty
years I have had chronic EBV, chronic mycoplasma,
and chronic HHV6. CDC has consistently failed to find
HHV6 in CFS. Meanwhile, the CDC has recognized the
swine flu outbreak and is working on it in a matter of
days.
"CFS is an infectious illness," the speaker contined.
"The CDC has watered down the definition so that it
bears no relationship to the disease. The agency
should model its research after the
Whittemore-Peterson Institute in Nevada. "[Instead]
it's calling people in Georgia twenty years later to ask them if they're tired. You are wasting taxpayer dollars. Adopt the Canadian definition, adopt the WPI methods, including viral research, and stop characterizing CFS as a psychological disorder."
And another old-timer: "We have been terrorized by
this illness, but no one seems to care that much.
We've experienced foreclosures way before the
normal population has. We can't work, we can't play.
We've lost our identities-it's devastated every area
of our lives. We need our doctors, our neighbors, to
know we're not lazy or crazy. Maybe until the CDC
can find solutions, they can at least educate."
If only!
And from seemingly out of nowhere emerged Dr. Fred
Volinksy on dial up, an authoritative person with an
exhilarating attitude who called in once, and then
again, the second time demanding the firing of
Reeves.
"We want new leadership for this program!" he said.
"Twenty years without any progress! You have at
least one to two million patients with CFS-and no
money!..I'll be absolutely disgusted if we have the
same leadership here," Volinsky continued.
"I need to know which senate committee has oversight over the CDC."
Becky was put off her stride. "Are you through Mr.
Volinksy?" she asked after a minute in her
honey-toned voice.
"No! I'll never be through!" Volinksy replied. "This is
an example of the whistle blower law being used in a
very unethical way," he said in a reference to Reeves'
invocation of the Federal Whistle Blower Act.
You'll recall that after the news was everywhere and
about to break in the Washington Post in 1988,
Reeves stepped forward and began spilling his guts
about the CFS slush fund.
That was almost two years
after I broke the same story in Osler's Web, but
who's counting? The point of the Act is to encourage
ethical conduct in government. Volinsky was implying
the obvious: Reeves used the Act to hang on to his
job.
For the record, the Senate and House subcommittees
that have oversight over CDC are the subcommittees
that appropriate money to the Department of Health
and Human Services. History shows they are easily
deceived by, and frequently in awe of, government
scientists.
Patricia Blankenship was another whose heartfelt,
thoughtful remarks kept the bar high for these
proceedings: "I've been in this fight for years," she
said. "I've testified for years-the things we've been
asking for all those years-there are no treatments,
no medical markers, the physician education is a
joke, there is no outreach to medical schools.
Doctors should not have to learn what is going on
from paper we've printed out from the internet that
we bring to them.
"I have very little confidence that CDC is going to
make new breakthroughs or help the patient
community, because the same people are at the
plow."
Scott Royal, who is the current project director for
Abt Associates, the contractor that was first hired by
the agency in 1988 to conduct surveillance and has
made ungodly amounts of money from the agency's
"CFS" boondoggle ever since, was the jolliest of
those who spoke. "Participation in our Macon
(County) clinics is very positive (for patients) and
provides validation to them that their experience is
real...The mere fact that CDC is funding this
research," he said, sounding a little choked up
himself, empowers patients because it makes them
aware that their disease must be important.
Another superfluous piece of flotsam from an agency
employee/conractor. Royal describes himself as a
"social and behavoiral epidemiologist" on his resume
and has a masters in public health. He is credited on
the Abt website for being "instrumental in designing
and implementing a strategy that has significantly
built the Abt Associates porfolio of work at the CDC."
In fact, Abt Associates opened an office in Atlanta in
July of 2008, an office that I'm guessing was built
with a lot of "CFS" research money.
To Royal, I would simply say,
I don't believe patients
are looking for empowerment from the CDC, the very
folks who helped disempower them, nor are they
looking for validation that what they are experiencing
is "real." Only a CDC pod person could infer, in 2009,
that patients are in a state of uncertainty over the
reality of what has happened to them.
In my experience, patients are looking for rational,
competent, scientific research. And if the agency
didn't hear that this afternoon, it never will.
So, in addition to my sentiments expressed above, I
think the CDC should get out of the empowerment
business.
And to those who braved the wear and tear of this
remarkable afternoon, I would like to say, "Group
hug, anyone?"
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