MESSAGE
| DATE | 2020-04-05 |
| FROM | Ruben Safir
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| SUBJECT | Subject: [Hangout - NYLXS] Trust the CDC
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Lessons From Lyme Disease: Six Reasons The CDC’s COVID-19 Failure Was
Predictable
Mary Beth Pfeiffer
Mary Beth PfeifferFormer Contributor
I am a fire-in-the-belly country journalist who found a scandal in my
backyard and wrote a book on it. Government and medicine have
systematically failed us on a spreading plague of ticks. And they know it.
Photos show a 17-year-old boy who died of Lyme carditis; the rash, and
endemic states.
Joseph Elone, 17, died in 2015 after a negative Lyme disease test. The
Lyme rash is diagnostic but ... [+] Elone family (top left); others from CDC
Lyme disease experts are not surprised by the failure of the U.S.
Centers for Disease Control to ensure quick diagnosis of COVID-19. For
them, the agency’s long-endorsement of a broken test for Lyme disease,
afflicting more than 300,000 Americans annually, is a sorry — but
telling — precedent.
Each year, the ranks grow of people whose Lyme disease was diagnosed
late simply because their test result was wrong. Perhaps a million
Americans suffer from lingering Lyme symptoms, many because their test
said “negative,” while their symptoms said otherwise.
Nonetheless, the agency has refused to retire an archaic test,
arbitrarily crafted at a conference in Dearborn, Mich. in 1994, even as
studies and meta-analyses documented the failure of the test and the
toll of disability grew.
Today In: Healthcare
“I wish I could say I’m surprised that CDC has so devastatingly and
arrogantly bungled the COVID-19 outbreak,” said Dana Parish, a leading
Lyme reformer and co-author of a coming book, “Chronic,” that is harshly
critical of the CDC. The agency has not only upheld a flawed test, she
said, but “aggressively and disingenuously discredited better tests.”
The parallels between COVID and Lyme are not exact. But here, in a
nutshell, are six ways the agency has failed Lyme patients, lapses that
might help explain its coronavirus missteps:
Saving Lives. Protecting People. The CDC's motto.
Saving Lives. Protecting People. The CDC's motto. CDC
· The agency defined Lyme disease by the test rather than the
symptoms. Doctors have been told: Trust the Lyme test or the rash.
Lacking those, they have been discouraged from diagnosing by symptoms —
a summer flu, joint pain, fever and malaise — even though the test fails
and the variable Lyme rash is absent or unseen. A CDC spokesperson
summed it up, when I was writing about a 17-year-old boy who had tested
negative, went untreated, and died after Lyme disease infected his
heart. The rash, the spokesperson said, “is the only manifestation …
sufficiently distinctive to allow clinical diagnosis in the absence of
laboratory confirmation.” Translation: No rash, no positive test, no
treatment.
· CDC limited who could get the test. Potential COVID patients had
initially been told they must have visited another foreign country or
been exposed to another infected person to be tested. Similarly, Lyme
disease has been strictly defined as a disease of endemic, or
high-incidence, states in the Northeast and Midwest, where a rash or
positive test is diagnostic. But ticks thrive in areas of California and
many other states, where the bar to diagnosis is exceedingly high, even
if a wise doctor suspects it. Residents must have knowledge of a
tick-bite, a positive test and a rash — three conditions that make the
chances of treatment tragically low.
· CDC has defended an indefensible test. We all know that the longer
you’re sick, the more difficult the recovery. Yet the Lyme test is built
on a single faulty premise: Wait. Antibodies take time to produce. Allow
the Lyme disease spirochete to disseminate. Then test again. The
agency’s point man on Lyme disease, Charles Ben Beard, recently told a
federal panel: “The diagnostic test is reliable in terms of it telling
you what you expect to hear.” Except that studies show it’s not.
· CDC has allowed outside influences to color its decisions. As the
nation’s chief policy-maker on Lyme disease, CDC has let its scientists
publish with key physician-researchers who have built careers on a view
of Lyme disease as easy to diagnose and treat. This includes providing
advice on papers dismissing alternative tests and upholding one set of
outdated treatment guidelines while ignoring another. Emerging science
suggests that the Lyme bug can persist after treatment, but the agency
has been slow to embrace it.
· The agency has failed to facilitate a new test, even as
recognition of the test’s failure grows. Instead, it has rejected other
tests, some from laboratories that meet stringent accrediting standards.
One of the original crafters of the diagnostic, which is actually two
sequential tests, Raymond Dattwyler, told me this for my book: “Twenty
years ago, I would’ve said they’re fine. Now I say, ‘oh s**t, we were
wrong.’ It doesn’t look as good as we thought it was.”
· The CDC has minimized the damage to patients. The medical
literature is rife with references to people who stay sick after being
treated early and exactly as prevailing Lyme guidelines recommend. Some
10 to 20 percent of early treated sufferers stay sick for at least a
year, 5 percent for 15 years on average. Now consider the fate of those
treated late. But instead of acknowledging what a BMC Public Health
study called “incapacitating fatigue, pain and neurocognitive
dysfunction” after treatment, the agency has minimized patient symptoms.
In 2016, after at least five years of saying that up to 20 percent of
patients stayed sick, it changed its website to say it was a “small
percentage” of patients. The CDC later dropped any reference to
population size.
Michael Cook is a British researcher who found that the Lyme disease
test produces 500 times more false negatives than the HIV test. “The
name Centers for Disease Control and Prevention does not reflect the
strategies and tactics of this organization,” he wrote in an email,
questioning whether the agency was intent on creating its own COVID test
from which it would profit.
“CDC has failed us all,” Steven Phillips, a Lyme disease specialist
and Parish’s co-author, told me. “Over the past week, I've been hearing
from physician after physician, telling me that now they see what I've
been saying all along for decades is true. Now they realize that CDC
dogma regarding Lyme and other vector-borne infections is a house of cards.”
Some diseases can, and, as with Lyme disease, should be diagnosed when
symptoms strongly suggest illness. Nonetheless, said Brown University
researcher Allison DeLong, “it is impossible to understate the value and
importance of having widespread access to reliable tests for all
infectious diseases. ... The hope for a vaccine (for Lyme or COVID-19)
is moot if you can't validate one with a reliable test.”
Follow me on Twitter. Check out my website or some of my other work here.
Mary Beth Pfeiffer
Mary Beth Pfeiffer
I am a veteran investigative journalist whose investigative reports on
Lyme disease, for a small upstate New York newspaper, did something
quite startling in 2012: They…
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