Certain politicians have been intoning the mantra-- Trust
the science-- for a couple of years now. They are assuming that the science is
settled, and that it is incontrovertible. Since they know nothing about
science, they assume that scientific truth is dogma, not to be questioned, not
to be challenged, but to be followed, like a dog following a master.
Besides, have you ever asked yourself what the science says
about the cognitive decline of a certain president?
As it happens, and as we have often noted, there is no such
thing as settled science. Any science that is worth its name is based on
skepticism.
Better yet, when you enter the world of medical science, as
a patient, things are not always as clear and settled as they seem. Such was
the experience of New York Times columnist, Ross
Douthat, a man who contracted what seemed to be a barely treatable version
of Lyme disease.
Douthat opens his column thusly:
Trust the science. That was the mantra that many people
repeated in the face of the Covid-19 pandemic — an entire worldview condensed
into three words, with many implications. Trust Anthony Fauci, not Donald
Trump. Trust authoritative medical bodies, not random doctors on the internet.
Trust official knowledge, not conspiracy theories.
In one sense, when it comes to covid, the science has done
its job. It has produced a vaccine. On the other hand, even if we accept that
the lockdown, social distancing strategy has worked, we are also learning that
it has produced many mental and physical problems, by itself. What is the value
of avoiding covid if the treatment produces other problems. Link here to Psypost
article.
By now, however, the sainted Dr. Fauci has been exposed as
the leader of an experiment that allowed sand flies to eat helpless beagles
alive-- in the name of science. Torturing beagles in the name of science-- it
will mark the end of America’s Fauci love.
Now, as we speak, vaccine mandates have caused firefighters
and police officers to walk off the job in New York City. For our part we favor
vaccination, but, in how much will New York City suffer for trying to force a
vaccine on people who are at very little risk of Covid.
Douthat continues:
In some ways this worldview has been vindicated — the
work of science brought forth vaccines with startling rapidity, while vaccine
resistance has led to many unnecessary deaths. In other ways, the Covid era has
offered case studies in why so many people mistrust official science — like the
drip-drip-drip of information that has taken the so-called lab-leak theory of
Covid’s origins from censored conspiracy theory to plausible and mainstream
hypothesis.
Obviously, the pandemic came as a godsend to Democratic
politicians. The science was limited but the rage against Donald Trump was
overwhelming. This meant that Democrats blamed the national response on Trump
and that Republicans thought that it had all become totally politicized.
But in the early days of the pandemic, the problem was
that there was so little official science yet in which to put our trust.
Instead, because Covid was a novel pathogen, we lived in a twilight zone for
months, dealing with urgent questions to which there was no clear answer: how
the disease spread and who was most at risk, whether masking or handwashing
mattered most, whether to put patients on ventilators or try to keep them alive
without them, what kind and variety of symptoms were associated with the
sickness, what kind of therapeutic drugs should be thrown into the fight. We
had to act in that twilight — as citizens, as doctors, as patients — without
certainty, following supposition, speculation and hypothesis. And to the extent
that confident medical pronouncements were issued in those days, they often had
to be amended or reversed.
In short, Douthat’s point is well made. In the beginning the
scientists were in some serious doubt. They simply did not know for sure. And
yet, they presented themselves as all-knowing-- for political, not scientific
reasons.
Douthat’s personal experience with medicine stemmed from his
having contracted a chronic disease. As it happens, medical science is not of
one mind on this subject. Different physicians, eminently qualified, offer
different prognoses and different treatments.
The experience of those chaotic months offers one way for
outsiders to understand the world of chronic illness. Because to fall into that
strange realm, as I did more than six years ago, is to live in the twilight all
the time.
If you haven’t passed into this country, it can seem like
a world where science is fundamentally mistrusted or rejected, because the
chronically ill end up seeking out so many fringe ideas and treatments, trying
out so many strange theories, bending an ear to so many oddballs and cranks.
But the reality is more complex. For chronically ill
people trying desperately to get better, actual science — the world of
hypothesis, experiment, result — matters in the most urgent way. It’s just that
they have entered a territory where there aren’t any clear authorities, any
definite consensus. And so a lot of the strange things they end up doing are
just a kind of home-brew versions of the scientific method — what it looks like
when ordinary people have to effectively become their own doctors and do science
on themselves.
Science has promised miracle cures. And yet, for some people
with chronic illness, the science cannot offer much of anything. As it happens,
some conditions are chronic and cannot be treated. And yet, some scientists
offer something like treatments, because they feel that they must do something.
One understands that no physician wants to say that nothing can be done-- it's
bad for business and its bad for human psychology. And yet, some treatments
cause harm....
As for Lyme disease, the condition that Douthat was
apparently suffering from, the world of medical science has been in something
like what he calls a “civil war.” Different physicians hold radically different
opinions about what does and does not work.
You would think that the matter would be settled. Apparently
it is not.
And the treatments these doctors deliver are incredibly
complex: Because every patient is different, and every infection might include
not just the Lyme bacteria but other so-called coinfections as well, they
devise bespoke combinations of antibiotics, “cocktails” of drugs with different
modes of action, while sometimes urging dietary changes and herbal regimens and
Epsom salt baths and all kinds of supplements as well.
But the other side says this:
Meanwhile, the orthodox view is that this supposed “war”
is a high-risk intervention against a disease that may not actually exist, and
the dissenting doctors are basically war profiteers, exploiting patients
desperate for a cure. And both sides marshal scientific evidence in their
favor: The dissidents invoke research showing that Lyme bacteria can, in fact,
persist in animal subjects even after they’re dosed with a course of
antibiotics; the establishment points to studies
showing that treating chronic patients with intravenous antibiotics doesn’t
seem to yield much benefit.
As a suffering person, then, you have to choose which
form of science to believe.
So, when it comes to Lyme disease, there are two sciences--
choose one. Or better, as Douthat did, you try both.
The first physician worked in New York City. He was, Douthat
explains, avuncular and reassuring. He prescribed antibiotics and declared
that the symptoms would go away within a year.
So, Douthat tried his treatment and discovered that it did
not work as advertised. Science requires empirical results to confirm its
theorizing. In the case of the first doctor, the results were not very good:
But the body’s experiences are their own form of
empirical reality, and as a patient you can’t follow a scientific theory that
doesn’t succeed in practice. And in the end the reassuring doctor’s theories
didn’t work — I didn’t get better on his steady dose of antibiotics, the
constant pain didn’t go away — while the advice to go off antibiotics entirely
led to disasters, where I stopped the drugs and disintegrated quickly.
And then he found another physician in Connecticut, a man
whose appearance inspired a lot less confidence. Not only did he not reassure;
he offered a frightening prognosis:
The second doctor had a wood-paneled office one town over
from our new Connecticut house, more like a den than a clinic, and books and
pamphlets littering the waiting room, each seeming to offer a different theory
on how one might treat an entrenched case of Lyme. He talked to me for 90
minutes, took copious notes, asked a thousand questions, and informed me that
chronic Lyme was an epidemic, wildly underdiagnosed and totally mistreated.
Could he get me better? Probably, but I was obviously very sick, and it would
take a while. Most of his patients took high doses of antibiotics for around a
year; I might need more; some needed years and years of treatment.
And yet, over time, the treatments offered by this physician
worked:
There were many false starts and blind alleys, including
a brutal summer when I took intravenous antibiotics for three months without
improvement, and a long winter of rural imprisonment for my family with a
father whose health was gone and whose sanity seemed doubtful.
But after about a year of trying different combinations
of antibiotics and extremely high doses, I finally found a cocktail that first
made my symptoms more predictable, and then enabled me to begin slowly gaining
ground, month upon month and year upon year — in a process that has taken me
from almost-constant pain to something approaching normal life and health.
So that dissenting doctor — and others like him, and many
researchers doing work on Lyme disease treatments outside the official line —
saved my life. But I also saved my own life, because I was the only one who
could actually tell what treatments made a difference. So I had to act like a
doctor or researcher myself, reading online for ideas and theories about drugs
and supplements, mixing and matching to gauge my body’s reaction to different
combinations — like a scientist working on a study with a sample size, an “n,”
of only one.
Obviously, one patient’s experience with the medical
treatment offered for a single illness, one that seems to be not very well
understood, does not necessarily apply to all forms of scientific
treatment.
And yet, Douthat’s experience showed him why many patients
are highly skeptical about physicians who pretend to know everything and whose
treatments are only marginally effective.
Because modern medicine demands replicability and prefers
simplicity in treatment, plus a strong dose of “first, do no harm” caution in
dosages and duration — and what I ended up doing was way outside those bounds.
And it was hard to imagine how my experience, the years of personalized and
sometimes reckless experiments borne of urgency and desperation, could be
translated into a chronic-Lyme prescription that was testable and replicable
along the lines that official medicine requires.
Settled science, even settled medical science, is often
unsettled. Scientific knowledge evolves; it changes; it is subject to the
interpretations offered by different physicians in different places.
By now, physicians are more likely to diagnose with tests
than with intuition. Surely, this is a good thing. And yet, physicians exude
confidence even when they are not confident of the effectiveness of their
treatment. Evidently, this elicits more optimism and hope in their patients.
However good such hope is, once a patient starts feeling that he has been
gulled by false hope, he will cease believe in the omniscience of an everyday
man of science.