Friday, May 22, 2009

Hillary Johnson: Five More Years


  Inside the Labyrinth
  Down (and Out) in Atlanta


  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

  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

  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

  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,"
  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

  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

  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

  "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

  "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

  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

  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

  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

  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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