Credibility & Convergence: A Look at CFS
Emerging illnesses don’t just spring forth as public health priorities. There are recognized models for how they gain attention and credibility. This article by Kim McCleary from the fall 2007 CFIDS Chronicle, offers a fascinating look at the factors that contribute to recognition and how CFS has fared so far.
Get the full story>> [in PDF format]
The article is too long to post here in full, so I'll just post a couple excerpts and you can read the original PDF for "the full story".
As we look back over the past 20 years to identify
turning points in the acceptance of CFS, it might
surprise you to know that our struggle and our
progress is also being observed and documented by people
outside the CFS community.
It’s not as if anyone master-planned this course, or, in
getting diagnosed, expected to play a role in bringing a complex
new medical condition to the attention of the public,
medical professionals and scientists. Yet here we are, 23
years after the Incline Village and Lyndonville outbreaks
generated interest in what came to be known as chronic
fatigue syndrome. Let’s try to see our progression as
others might.
In Emerging Illnesses and Society, Randall Packard
and fellow editors describe four factors that determine how
a health condition becomes a recognized illness that warrants
action by health authorities:
■ The epidemiology of the illness;
■ The communications and leadership of the community
of suffering;
■ The culture and constraints of the responsible public
health institutions; and
■ The response of the media.
Let’s apply their model to our history.
Factor one:
epidemiology
Epidemiology is a big word that
basically refers to who gets a particular
condition, how many cases there
are and how it spreads. The epidemiology of CFS has been
a puzzle from the start. ... The
deaths and rapid spread associated with AIDS were dramatic,
compared to the more subtle devastation wrought by
CFS. This contrast impacted visibility and how the study of
CFS was approached by scientists.
Over time, the truly
chronic nature of CFS came into focus as well. The CDC
reported recovery rates as low as 12 percent and compared
the disability associated with CFS to that of multiple sclerosis,
AIDS and COPD.
While the 1994 definition remains the “gold standard”
for research, lack of agreement about how to define CFS—
and what to call it—has created a confusing picture to
those on the outside. This points to areas where more work
is needed—particularly work toward determining the
pathophysiology and establishing a diagnostic test.
Packard and his colleagues echo this thought:
“Part of the uncertainty with illnesses such
as CFS and fibromyalgia has to do with the
difficulty in knowing what constitutes a case
in the absence of a clear diagnostic test.”
Factor two:
community leadership
and communication
Patients organize for action and respect
Support groups formed quickly
in areas where CFS first emerged in
clusters, but it took luck and media
reports to help other patients find each another.
In 1990, researchers recognized the need for a coalition
of science and medical professionals concerned about CFS
and formed the American Association for CFS (AACFS,
now the International Association for CFS/ME). It hosted
its first research and patient conference in 1992 and has
held seven biennial meetings since, providing an important
anchor for the field. Its newsletter and an affiliated Journal
of Chronic Fatigue Syndrome have helped promote information
exchange among researchers and clinicians.
Broader access to the Internet by the late 1990s dramatically
changed the method and frequency of communication
within the CFS community as bulletin boards and
listservs like Co-Cure helped spread information and give
voice to people who couldn’t access local support organizations.
Packard and his colleagues make a similar assessment:
“Groups associated with CFS and fibromyalgia
have been successful in overcoming
the challenges to illness emergence . . .
This activism accounts for much of the
public health attention that these illnesses
have gained.”
Factor three:
the culture and constraints of responsible health institutions
Agency paradigms shift in ways that benefit CFS
Without getting bogged down in the missions of
various health agencies, suffice it to say that the CDC and
National Institutes of Health (NIH) both had major responsibilities
as CFS emerged in the 1980s, and still do today.
These changes are
important to the history of
CFS because as a chronic,
multisystemic illness, it didn’t fit well with either of these
institutions’ traditional approaches.
The CDC has been widely criticized for its initial
response to CFS after Dr. Cheney and his partner Dr. Dan
Peterson asked a team of CDC’s rapid-response officers to
help evaluate the Incline Village patient cluster in 1985.
The CDC team reviewed charts and ended its investigation
after examining just a few patients, quickly dismissing
any possibility of a new public health threat. At the
same time, AIDS fit squarely in CDC’s detect-and-control
paradigm and consumed its available resources, although
AIDS activists would argue that the CDC failed that disease
early on, too.
efforts were largely considered inadequate and lacking a
true sense of CFS beyond the symptom of chronic fatigue.
Public challenges by patient advocates, myself
included, over CDC spending for CFS culminated in 1998
with the CDC’s own principal investigator, Dr. William
Reeves, presenting evidence that officials had lied to
Congress about CFS expenditures. With pressure from the
CFIDS Association and Congress, $13 million in funds was
restored to the CFS program, allowing researchers to rapidly
expand the breadth of research from 1999 to 2006.
Provider education activities and the first national
public awareness campaign were funded after the CDC
documented overwhelming evidence of the magnitude of
CFS and under-recognition by the pubic and medical community.
In the “post-payback” era, the program is contracting
again, but important gene-based studies of the biological
underpinnings and the public commitment of CDC director
Julie Gerberding helped cement the message that CFS is
real and serious.
What about the NIH’s history with CFS? The NIH’s
Stephen Straus was among those who showed EBV not to
be the cause of the mystery illness of the mid-1980s and
later linked CFS to psychological factors when his own
theories didn’t pan out.
Research on the role of the autonomic
nervous system was “hot” after a Johns Hopkins team
linked CFS to neurally mediated hypotension. Expertise
from other disciplines was warranted, so advocates pushed
to transfer responsibility for CFS from the National Institute
of Allergy and Infectious Diseases (NIAID) to the Office of
the NIH Director. A State
of the Science conference
hosted by NIH in 2000
helped identify promising
directions, but funding levels
suffered when NIAID
discontinued support for
the CFS research centers.
An emphasis on neuroimmune mechanisms of CFS
was fostered by Drs. Vivian Pinn and Eleanor Hanna of the
Office of Research on Women’s Health (ORWH)
At the top of the health policy “chain of command,”
the Department of Health and Human Services in 1996 created
one of the only disease-specific advisory committees
formed during the Clinton administration. It was a legacy
left by former Assistant Secretary of Health Philip Lee, a
CFS champion, giving advocates a seat at the table with
officials from five health agencies.
Although the committee’s role has been disparaged by
some in the community, it has helped maintain a dialogue
between the patient community, researchers and those
responsible for implementing public health policy. The
CDC scandal came to light through this committee and an
important Social Security policy ruling—one recognizing
CFS as a disabling condition—was shepherded by the
committee, although much of the work occurred with
CFIDS Association representatives and agency officials in
between the infrequent public meetings.
These developments, geared to forming accountable
partnerships, are in keeping with one of Packard and
colleagues’ keys to success:
“Public health and medical research institutions
can benefit . . . from collaboration.
Medical researchers, public health officials
and communities of suffering need to be
partners.”
Factor four:
media response
Controversy gives way
to credibility
When the cluster of illness
occurred in Incline Village, a media
frenzy followed Cheney’s and
Peterson’s reports to the authorities.
Nightline and 20/20 covered the resort town outbreak.
Fears of contagion caused panic and stigmatized sufferers.
But the “mysterious” nature of the illness also helped
attract more moderate journalists to it. Newsweek’s
Geoffrey Cowley wrote the November 12, 1990, cover
story about CFS, and science writer Joseph Palca penned
“In Search of an Elusive Disease” for Science magazine
in 1992.
Firsthand accounts like Hillary Johnson’s “Journey
Into Fear” published in Rolling Stone helpedbroaden the
view beyond the early years’ “yuppie flu” stereotype that
painted sufferers as type-A burnouts. The Golden Girls
creator Susan Harris, also a CFS patient, told her story
through character Dorothy in a two-part series that opened
the 1989 season and still resonates in reruns seen today.
So what happened? With this initial influx of affirming
media, why didn’t public opinion swell in support of CFS
patients? Perhaps the contest within the medical community
and public health institutions over theories of causation,
coupled with premature reports of research breakthroughs,
contributed to frustration, then apathy, on the part of journalists.
Without the “medical certification” required for
widespread support, serious media attention languished.
Still, as Packard and colleagues documented, in the 1990s
there were roughly 1,400 newspaper articles that mentioned
or discussed CFS, “helping keep CFS on the public health
agenda.”
Fast-forward to the CDC-funded public awareness
campaign launched with the CFIDS Association in 2006. It
has ushered in a new era of CFS media coverage. On April
20, 2006, CDC director Julie Gerberding briefed the press
on a series of CFS studies, generating significant coverage
by a large number of general and scientific news outlets.
On November 3, 2006, she appeared as the lead speaker on
a panel of CFS experts at the National Press Club, garnering
repetition around the world, literally, of the message,
“CDC: CFS Real, Brutal” (UPI, November 3, 2006).
Although today’s information-saturated environment
demands constant reinforcement of the basic messages
about CFS, since the press conference, thousands of articles,
broadcast reports and interviews with experts have
eclipsed lingering doubts about the illness. Recent reports
of viruses linked to CFS subsets now secure serious media
attention and hard-earned credibility, contributing to scientific
interest, rather than controversy.
Looking back; looking ahead
Whether you view our history from inside the community
or as an outsider, it’s clear we still have much work
ahead to make CFS a truly mainstream medical concern.
Does Packard’s book offer a way forward to even greater
visibility and higher public health priority? Regrettably, no.
In fact, the editors write the following:
“The process of emergence becomes more
complicated as one moves [toward greater
acceptance]. … There is no single pathway to
getting placed on the health agenda.”
Nonetheless, viewed through the emerging illness
model, the destination is clear. Concentrating on the four
factors, we need to increase research to find a diagnostic
test, work together on national issues, collaborate with and
influence public health institutions and keep the media
momentum going. With the ground we’ve covered and all
that’s at stake, there is simply no going back.
* * *
Unfortunately, there are doctors and journalists who latched onto the "all in their heads" notion and will not let go of it.
One is the co-worker of someone who later developed CFS. Her thought was that he would see her problems and change his stance because he knew she was not an emotional basket case. Wrong. In the 2006 CDC press conference, someone used the word "stress" (referring to either emotional or physical stressors that would tax the immune system), and that journalist wrote his article to stress stress, with almost no mention at all of the genetic and other abnormalities cited in that press conference. Worse yet, his article was picked up by smaller newspapers across the country who had not had someone at the press conference. So, while half the country was celebrating that CDC had finally acknowledged it wasn't "all in our heads", the other half was being told that that's exactly what it was.
One of our local TV stations has started a new segment where twice a week on the evening news, the doctor who is their medical correspondent addresses patient questions. I know he's been sent questions about CFS referring to some of the new studies showing biological abnormalities. He hasn't answered any of them; he's another of those who made up his mind long ago that it's psychiatric and has rejected any information that shows otherwise.
So, we still have a long way to go in educating the media that what they were told 20 years ago by Straus & Co. was not accurate and that they need to open their minds to the new information.
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