Inkwell: Authors and Artists

    
OK, finally able to catch up here! Sorry to have disappeared for a
bit.

<ssabrina> said: "It really is pretty ironic that you went to Death
Valley, though I suppose one could say it was the beginning of the
death of the
mortally ill Julie."

It is even more apt than you guessed, Janis. Here's how I describe
it in the prologue of the book: "Before I left for Death Valley, I’d
told friends that I felt like I was going to the desert to die. I
fully expected to be breathing at the end of the trip, but I
couldn’t keep everything together as I had been doing for years,
holding on to my responsibilities and dreams in spite of the
barriers my illness threw in my path. Whether the experiment worked
or didn’t, the life I had lived was over. I was staring into a
cavernous darkness, beyond any imagined future I could invent."

While I was there, I discovered an enormous freedom in that sense of
surrender. With all my imagined obligations gone, I found that life
had an unimagined spaciousness. Just sitting in my camp chair,
watching the colors of the desert change as the sun moved across the
sky -- it felt like enough.

That became a touchpoint for me that has proven durable. When I'm
stressed out, caught up in my desires and dreams and aspirations and
uncertainties, I'll think, "I died out there in the desert. This is
all extra, an unearned gift." And that kind of resets me, every
time.
  

    
<karish> said this: "The book framed what you'd shown us in your
articles and on the Well in the context of your personal and
spiritual history. Thanks for your openness. This framing shows us
where you developed the
strength to do this knowing that while some of us would find it
inspiring others would dismiss your work as over-emotional and
subjective."

As the book was forming itself in my mind, it could have been
structured in many different ways, and the different approaches
offered different things. Initially, I imagined a book that would
have tried to give more of a big view of the illness, describing
other people's experiences with the illness as well. In such a book,
I would have described my own experience, but in a less intimate,
emotional way.

But as time went on, all these amazing things happened -- with mold
avoidance and Erik the Mold Warrior and Timmy the Wood Elf and
meeting John and having my health improve so much. And then I felt
like there was this big challenge to bring the reader with me
through all that, to keep them with me as I dove deep into the
rabbit hole. I felt like the best way of doing that was to open
myself up fully to the reader.

I do lose a kind of distanced authority in doing that, and I also
lose the big picture view of the illness. And, of course, I make
myself hugely vulnerable.
  

    
<ari> asked about what we do about bad science, which is a really
terrific question. In the book, I highlight how bad science affected
me and how I responded to it, but I don't really tackle the question
of solutions. Of course, I've thought about it, though! It's
question of deep interest to me, and I hope to do more writing about
it in the future. I feel like a lot of the discussion about the
reality of science can get exceedingly intellectual and ungrounded,
kind of forgetting about the real-world consequences and what we're
really trying to do with this whole scientific project. So I see a
place for the kind of writing I really like to do, which blends the
emotional and the intellectual.

There's a lot more I want to learn about the efforts to improve
science, but I can point you to one of the most interesting
projects. Brian Nosek of the Center for Open Science has been doing
fantastic work on this, both in trying to establish just how the big
the problem really is and in coming up with solutions. The former is
what he's gotten the most publicity for at this point -- he's led
big efforts to replicate results, starting with psychology, where
his team found that only a third of psychology results replicated.
Here's an article discussing that, including the debate about its
significance:
<https://www.theatlantic.com/science/archive/2016/03/psychologys-replication-cr
isis-cant-be-wished-away/472272/>

Less well-known is Nosek's work on solutions. He's proposed major
reforms to the process of scientific publishing and review, laying
out his vision here: <https://arxiv.org/abs/1205.1055>. The abstract
describes it pretty well: "Existing norms for scientific
communication are rooted in anachronistic practices of bygone eras,
making them needlessly inefficient. We outline a path that moves
away from the existing model of scientific communication to improve
the efficiency in meeting the purpose of public science - knowledge
accumulation. We call for six changes: (1) full embrace of digital
communication, (2) open access to all published research, (3)
disentangling publication from evaluation, (4) breaking the "one
article, one journal" model with a grading system for evaluation and
diversified dissemination outlets, (5) publishing peer review, and,
(6) allowing open, continuous peer review. We address conceptual and
practical barriers to change, and provide examples showing how the
suggested practices are being used already. The critical barriers to
change are not technical or financial; they are social. While
scientists guard the status quo, they also have the power to change
it." He wrote this five years ago -- it'd be interesting to talk to
him to find out if he feels like we're moving in that direction at
all. He's also founded a start-up to create software that will help
scientists both share their work and *do* their work better, with
the hope that the latter will seduce scientists into doing the
former.

I do think that major reform is needed. John Ioannidis says that 90
percent of published research is wrong
(<https://www.theatlantic.com/magazine/archive/2010/11/lies-damned-lies-and-medi
cal-science/308269/), and more than half of even the best research is wrong. Of course, we wouldn't expect all published research to be right -- we should expect that we'll have many false leads along the way. But the problems we're dealing with right now are a lot bigger than that, and I think right now, we're wasting most scientific research dollars. It's a testimony to how valuable science is that it continues to make an enormous contribution to society in spite of all that waste.

The good news is that the scientific community is really waking up
to the problem (though much more is needed). It'll be fascinating to
watch all this unfold in the coming years.
  

    
I do think the problems with the PACE trial are especially
egregious, though I would also say that at this point, I feel wary
of evidence-based medicine as a whole. Most of the evidence just
sucks. The whole field of nutrition, for example, is a mess, and
there are also astonishing and frightening problems in cancer
research. And really, the problems are everywhere. It's just that
we're only now beginning to look. 

I went to a cancer clinic for a test once (not for cancer--an immune
system test that is rarely done outside of oncology). It felt so
industrial to me. It's hard to describe how violent my response was
against it. I trusted NOTHING about it. It felt wrong to the core.
That was an emotional response, though it was informed by knowledge
that the scientific underpinnings of a lot of this stuff are rotten.
My thought was, "I'd rather die."

But then, of course, it's complicated. I know people whose lives
seem to have been saved by chemotherapy and radiation. Sometimes it
really works.
  

    
Do you foresee yourself doing another book in the future, looking at
these things from the more distanced stance, Julie? Or other
journalism on it? The work you did on getting word out about the
PACE trial's grievous failings was such important work to have been
part of. It will affect people's lives, as will, differently, this
more personal book.

(I know it's early to be asking about the future, yet people always
seem to do that at bookstore events, so I will here.)

You asked us what surprised us about the book (we who followed the
life that led to it, and then the writing). What surprised you? Not
in your life--but in the way the book turned out in the end?
  

    
One of the problems is that unless you do out and out fraudulent
research and are caught at it, you can build a damn fine career on
irreproducible results.
  

    
Truth, <mcdee>, truth. That's what needs to change in the
institutional structure of science. 

Computer just died, so I'll come back to Jane's question shortly. 
  

    
I do see more books in my future, though beyond that, I don't really
know.  There's so much work that needs to be done in this world, and
I have a wide enough variety of talents and interests that I can
feel called toward so many different things. 

The immediate next thing I see myself doing is writing more pieces
that are related to the book. The book has so many different facets,
and I feel like for each one, I can focus on just that and write a
little self-contained essay. The Slate piece I did about assessing
internet cures was one example of that. I also want to write an
essay just about the love story part. 

In a longer term way, I'm sure I'll continue to write about ME/CFS
to some extent. It's so important, and I've invested so much in
learning about it, and so it just seems like a waste not to use that
learning to do good in the world. But I don't really see that being
the center of my work for decades to come. I also imagine that I'll
get back to doing some math writing, though again, I don't see it
being the center of my work. Right now, I'm not sure what will be.
The issues about reliability of science certainly draw me, so maybe
that will be it -- but really, who knows?

The only thing that feels really clear to me is that in an immediate
way, I need a really big rest. I've gotten a nasty series of
exposures after my next door neighbor's house flooded, and that's
left me unable to live in my own home and at an alarmingly high
level of reactivity -- I can easily end up paralyzed and unable to
speak these days, after an extended period before the exposures when
I was close to normal. We've been dealing with this for a year now,
and it's steadily gotten more and more difficult. So I'm plum worn
out, and my body desperately needs an extended period of time
without exposures to heal up and for my immune system to calm down. 

So we're in the process of converting our van, and in a week or so,
we're going to head for the hills. John will spend some of his time
with me and some of his time elsewhere -- we're playing that by ear.
But my hope is to spend the summer going into as few buildings as
possible, breathing really good air, and not feeling pressure.
Giving the well time to recharge, and seeing what arises within me.
I feel hugely blessed that I can make this happen. 
  

    
One more thought on the what's next question: I'm one of those folks
who never runs short of ideas, and here's one I was rolling around
in my head yesterday. I was thinking, yet again, about how much I
wish I could get someone to study me. My reactions are so clear and
so profound and so fast that it seems like it shouldn't be that
difficult to get some idea of what's happening to me. It would be
really, really cool if I could finally get some serious scientists
interested, and write a follow-up book about the process of
unraveling the physiology of this.
  

    
As far as what surprised me...

My mother ended up being a really big presence in the book, and back
when I wrote the book proposal, she wasn't in it at all. As I was
writing it, it was clear to me that I needed to talk about her and
her view of the world. It felt so obviously needed that it didn't
really feel surprising -- and yet, I hadn't gone into it knowing
that.

Mostly, I just feel really proud of the book. The biggest feeling of
surprise, I guess, is that I think the book lives up to the images I
had for it. I did it.
  

    

While I agree that social science studies in general, and especially
psychological ones are often not reproducible and often not
sufficiently well done to merit being replicated, and that medical
research can be both sloppy or not reproducible, or
worse–fraudulent–I think that using the word 'science' to cover just
the limited arenas of social science, nutrition, and medicine, is
highly misleading. Other scientific disciplines, such as biology,
chemistry, physics, mathematics generally don't suffer these
problems very much.  Your words, taken out of context, could do harm
to the scientific endeavor writ large.

Also, the impacts of the corporate food lobby on research in the
areas of nutrition, medicine, and perhaps psychology (marketing) are
outsized and generally negative for medical providers and patients.

Bringing attention to ME/CFS patients and the neglect and worse of
the medical establishment is an enormous positive, of course, and I
commend you for that.
  

    
That's an important point, <wickett>. Thank you. I was overly broad
there, and I'll be more precise in the future.

Science is HUGE, and different fields have different characters. At
this point, it's clear that there are big problems in psychology,
medicine, nutrition, and almost certainly economics. Physics seems
pretty unlikely to have similar problems, and I'd guess the same is
true of chemistry. I'm less sure about biology. Math is different
from science, so replicability isn't really the issue there. With
math, it's simple truth that's at stake. Even in math, though, there
are large-scale problems in subareas from time to time, where people
realize that the foundations aren't so solid and they find
themselves unsure what's true and what's not. It takes strength of
will to go back to the beginning and clean up the mess, and doing so
is not well-rewarded.

I think what I'd say is that some areas of science have huge
problems, some areas almost certainly don't have huge problems, and
we don't yet know how far the problems spread.
  

    

Thank you kindly, Julie.
  

    
economics isn't called "the dismal science" for nothing...

But anything done by human beings will be error prone.
Understandings are corrected and altered all the time, in every
field. Science's gift is that the errors or misunderstandings do,
eventually, get caught up to. What was egregious about the PACE
trial, as I understand it through your writings, Julie, is that they
themselves rigged the study, changed the bar midway through, and
went in from the start intending to prove a preconception. That
isn't science, though it could have been, way at the beginning, well
intended. At some point though (as when they altered the definitions
of "cure"), they must have known they were going beyond accepted
practices. 
  

    

i've been largely offline the last couple weeks, and i'm sorry i missed
most of this discussion! it's great reading it here. 

i'd like to ask about something, as a fellow writer and patient:

does the process of writing affect what you believe to be true? 

for example, if you feel wishy-washy about something, or have a half-baked
theory about some element of your own psychology, do you turn it into
something more solid-seeming in order to write about it?

i think my other questions i asked in that Psychology Today blog post!
  

    

I haven't quite finished this book in final form.  I did read most of it in
draft form.

When I was reading it I came away feeling that there were 3 distinct voices:
1.  Sort of general narrative of this happened, that happened; 2. The
scientist which was somewhat detached, impersonal compared to #1 and then 3.
a wonderful, strong melodic and poetic voice when talking about the natural
world - the mountains, the cliffs, etc. richly descriptive.

How are of those voices are you?

Similarly at a certain point I found myself making a timeline from beginning
to end that consisted of location, relationship (BF/husband) and health
status.  I literally had 3 parallel horizontal lines demarking those
reference points.

What, if any, chronolgy did you work with/from?
  

    
That's how aware of those voices are you?
  

    
Interesting questions, lendie.

I really wasn't very aware of those different voices when I was
writing it, though I definitely get the point you're making. To the
extent I could, I worked to integrate the various aspects of the
book, so that each passage worked on different levels at once. So,
for example, the material about my childhood is relevant both for
those who care about my personal transformation and for those who
care about the medical mystery or the scientific issues, because I
do a lot of careful thinking about how those experiences may have
affected my illness and how I could use those connections to help
myself get better.

Still, I think you're right that different passages are dominated by
different tones, even if the underlying material reflects on
different aspects of the story. In a fairly unconscious way, I think
I tried to weave those different voices together, so that the reader
never spends too much time in analysis or lyricism or narrative,
losing the others.

Chronology also came about largely through trial and error. I tried
to make it essentially chronological, starting with the first time I
thought, "Maybe I'm sick" and moving to the present. But there was a
lot of material I had to go back to, and figuring out the best place
to squeeze it in was HARD. I basically pursued the strategy I used
in learning to build my house: I made mistakes and then I fixed
them. And then I fixed my fixes!

I never got very analytical about that process. I never, for
example, made a chart like you did. I'm really curious -- did any
patterns emerge when you looked at that?
  

    
I'm delighted to report that Through the Shadowlands got a very
positive review from the New Yorker, which called it "eloquent,"
saying, "Rehmeyer’s writing is full of verve and curiosity, and
she’s warmly attuned to how her plight is, in fact, familiar."
Woohoo!

At the same time, the review makes me want to bang my head against
the wall. Somehow, Gelman (who is a statistician and a critic of bad
science) seems not to have comprehended any of the very, very
serious problems in the PACE trial, and from this review, you'd
think that my central problem with the trial was that the treatments
just didn't work for me. It's a strangely boneheaded analysis from a
very smart guy. 

And then there are things like the teeth-numbingly bad photograph
and the use of "chronic fatigue" rather than "chronic fatigue
syndrome" in the headline. That matters, because if you have chronic
fatigue, you're tired a lot, and if you have chronic fatigue
syndrome, you've got a devastating, multisystem illness. Similar as
the phrases are, they're really, really different things.

But hey, the bullshit about this illness is endless, and it's not in
my power to stop it entirely (though I do hope my work will
contribute to a lessening of the flow). And hey! I got a great
review in the New Yorker!
  

    <scribbled by tnf Mon 10 Jul 17 09:42>
  

    
Still, a TNY mention is good for getting the word out.
  

    
Yup. I expect they'll get some nice letters too.
  

    
That's really great news about the NYer.
  

    
Julie, if you think it's worthwhile to treat the New Yorker review
as a teachable moment, I think a good approach would be to ask Prof.
Gelman for a more detailed take on the PACE study.

"I see the PACE study both as someone who has the disease being
studied and as a scientist for whom scientific accountability is
very important. I'd be very interested to hear what you think of the
PACE study's experimental design and of the interpretation of its
data."
  

    
I found that article slightly confusing. He seemed to be saying that
the fact that the participants in the study may have had many
different conditions was why it was not up to the task of providing
insights? Or was that the point he was making after all?   

Nice how much he praised the book, anyway!