inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #0 of 90: Jon Lebkowsky (jonl) Thu 22 Jun 17 11:09
    
Inkwell welcomes Julie Rehmeyer, who will be discussing her memoir
_Through the Shadowlands: A Science Writer's Odyssey into an Illness
Science Doesn't Understand_,  which describes her journey navigating
the science and politics of poorly understood illnesses, based on
her own experience with myalgic encephalomyelitis, also known as
chronic fatigue syndrome (ME/CFS).

From Publisher's Weekly: "Science journalist Rehmeyer’s deeply
personal illness memoir stands out for the lucidity of her
self-analysis and pragmatism about managing a life turned upside
down by chronic fatigue syndrome (CFS). She emerges as
simultaneously a science journalist frustrated with established
medicine’s dismissiveness, a patient open to the pseudoscientific
approaches of non-traditional practitioners, and a desperate woman
reaching out to suffering peers on the Internet for support and
advice. This last avenue ultimately leads her to an extreme removal
of mold from her environment, starting with a body-resetting solo
expedition to Death Valley. Exploring ideas of dependence and
self-sufficiency, Rehmeyer shows her illness through the lens of her
personal relationships―with her strange and abusive mother,
mentally ill first husband, mostly distant siblings, and two
successive partners, the second of whom is supportive where the
first one is not. In this way, she explores her illness’s
psychological aspects while never giving up the idea that CFS has a
real and profound physiological component. Rehmeyer’s frustrated but
cautiously optimistic story will resonate with readers who value an
intelligent, scientific approach to life but wonder what to do when
there aren’t any good answers."

Julie is an award-winning freelance math and science journalist and
contributing editor at Discover magazine. Her work has appeared in
the New York Times, the Washington Post, O Magazine, Discover,
Science News, Aeon, Wired, High Country News and many other
publications.

Joe Flower leads the conversation with Julie. With over 37 years'
experience, Joe has emerged as a thought leader on the deep forces
changing healthcare in the United States and around the world. He
has spoken to or consulted with hundreds of clients ranging from the
World Health Organization, the Global Business Network, the U.K.
National Health Service, the U.S. Department of Defense, and Fortune
100 companies, to the majority of state hospital associations in the
U.S. as well as many of the provincial associations and ministries
in Canada, and an extraordinary variety of other players across
healthcare in every sector.
  
inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #1 of 90: Joe Flower (bbear) Sun 25 Jun 17 13:08
    
Welcome, Julie. Thanks for talking with us.

Let me lead off by asking what seems like the heart of this whole
question: You're a pretty rational, science-based person. We live in
a time when we are increasingly flooded with pseudo-science,
anti-science diatribes, skepticism about science (and no part of
science is more prone to this than medical science). 

And here you are, studied math at MIT, on the masthead of Discover,
a Visiting Fellow at the Santa Fe Institute, well-published about
science and mathematics, a pretty well known science writer. And you
are brought low by a mysterious condition for which medical science
comes up with answers that are both few and from your experience
just plain wrong. So you go off in pursuit of a theory, a
possibility, that must have seemed like just another of these whacko
psuedo-science theories knocking about the Internet.

In retrospect, it appears that pursuit was exactly the right thing,
just what you needed to begin to find your way out of the trap you
were in. But at the time it must have seemed so counter to all your
training. It must have taken a powerful push to get you to consider
something so radical. 

Tell us about that moment, and what it took to get you to shift your
perspective so strongly.
  
inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #2 of 90: Julie Rehmeyer (jrehmeyer) Sun 25 Jun 17 21:36
    
It certainly did! take a powerful push! Everything you say about how
foreign this approach was for me is bang-on.

But for the previous year, I’d been so sick that I often couldn’t
turn over in bed. I’d gone to the top specialists in the world, and
I’d pretty much run out of medical options. I was running out of
money, too, and I could barely work. I was living alone, had little
family to turn to, and was really too sick to even take care of
myself. I had no idea what was going to happen to me. Life in a
Medicaid-funded nursing home?

Furthermore, I had little hope that medical science was going to
offer me any solutions anytime soon. At that time, the National
Institutes of Health was spending about $5 million a year on
research on chronic fatigue syndrome—only enough for a handful of
small studies. There are about a million American patients, so that
was five bucks a patient. By contrast, multiple sclerosis, which is
similarly devastating and which is funded to an average degree,
receives about $300 per patient. A couple of decades of research had
produced many studies, but they were small, they hadn’t been
replicated, and the findings identified apparently unrelated
abnormalities in practically every system of the body. When I looked
at them, I had no idea which findings were solid and which were
phantoms that would disappear if someone tried to replicate them.
And I saw no prospects that funding was likely to increase.

So simply waiting for science to find an answer for me wasn’t really
an option.

Around this time, I managed to publish a story about chronic fatigue
syndrome in Slate: <bit.ly/slate-cfs>. I worked on it for five days,
at the cost of a week afterward spent mostly unmoving in a darkened
bedroom. In that story, I “came out” as having the disease publicly
for the first time, and as a result, I began receiving friend
requests from patients on Facebook. I accepted them without thinking
too hard about it—seemed the friendly thing to do. I’d been familiar
with online forums for CFS patients previously, and I’d been pretty
put off by them. I’d wrinkled my nose at the unscientific thinking,
the zillions of (to my mind) wacko treatments patients experimented
with, and most of all, the overwhelming suffering. But on Facebook,
I came to see a different side of of my fellow patients. I saw
people carving out meaningful lives for themselves despite all that
suffering—and because I was now dreadfully sick myself, the
suffering no longer seemed frightening. It seemed familiar.

One subgroup in this teeming online world consisted of patients who
claimed that taking extreme measures to avoid mold had led to
extraordinary improvements in their health. Initially, I scoffed:
pseudoscientific hogwash, i figured. I understood that mold could
cause respiratory problems, but it couldn’t cause neurological
problems like mine. To get a sense of what I was dealing with, check
out this little video, of a relatively mild episode:
<https://m.youtube.com/watch?v=8fLu7v36Hcg>

But I read a blog post by a young man who had spent two months
living in a cargo trailer in the desert, and he posted pictures of
himself running. Running! Lifting weights too! Reading his post, I
felt as though my heart would burst with longing to run through my
beloved mountains again. “Exercise” for me often consisted of
crawling to the bathroom, and that exertion could be so intense for
me that it would cost a day-long exacerbation of my symptoms.

I was intrigued enough that I reached out to the “moldies,” as they
called themselves. Can’t hurt to ask a few questions, right?

They turned out to be, in many ways, an impressive group of people.
One was a Harvard lawyer, another an MIT computer scientist, a third
an art history professor.  They recommended that I spend two weeks
in the desert with none of my own belongings to “get clear” of mold.
They said I might or might not feel better while Iw as there, but
that when I came home, I’d react clearly and strongly to my own
stuff. That would give indubitable evidence that mold was indeed my
problem, and by strictly avoiding it, they claimed, I’d recover.

I wasn’t at all convinced that their claims were true. In fact, I
found it almost impossible to believe that mold was really at the
heart of my illness. I’d never lived in an obviously moldy building,
as the moldies had. I’d never gone into a building and suddenly felt
much worse. I’d gotten sick in dry New Mexico, I’d lived in four
different states during my illness, and I’d never gotten better or
worse when I moved. Nevertheless, I decided to try it.

I think I chose to pursue this cracked theory rather than the
zillions of other cracked theories available to me for a bunch of
reasons. One was that even though there wasn’t much scientific
evidence to back the idea up that I knew of at the time (I later did
a lot of research on this and found some intriguing findings), the
theory was as plausible as any other I’d heard, even from the fancy
specialists I’d gone to see. Mold produces toxins that are known
neurotoxins. There was a big debate about whether they could cause
us harm at the levels that we might breathe in a moldy building, but
still—a plausible mechanism existed. And there are lots of other
nasties in the air in water damaged buildings—bacteria, bacterial
toxins, particulates, volatile organic compounds, on and on and
on—and little study had been done on the impacts of any of these,
though there were reasons to think that each of them, alone or in
combination, could do bad things to us.

Also, the other options I knew about weren’t very appealing to me.
Sure, there was a near endless list of supplements that someone or
other claimed had helped them, but I’d experimented with a zillion
supplements already and never found any of them helpful. Sure,
another supplement could be helpful, but it was hard to get excited
about that. Similarly, I’d tried acupuncture several times—yeah,
people said that the particular practitioner was really important,
so a different one might be helpful, but… Other things just sounded
so whacked that I wasn’t willing to go there, like the guy
experimenting with shining a red light up his nose.

And I was on a bit of an upswing, just enough that I thought I might
be able to pull off an expedition to the desert (though the idea of
ending up paralyzed and alone in the middle of the godforsaken
desert was certainly frightening). The idea of managing to have an
adventure even while that damn sick appealed to me. It made me feel
like me, when so much of what made me feel like me was taken away. 
I didn’t really think it would work, but if nothing else, it’d make
a hell of a story.

I also liked the fact that the risks were pretty clear. I wasn’t
having to down some sketchy substance with unknown side effects.

Finally, I just had an intuitive sense of being drawn to the desert.

By the way, I discuss some of the factors that I think are important
for evaluating whether to try an untested treatment here:
<http://www.slate.com/articles/health_and_science/medical_examiner/2017/06/be_s
keptical_and_don_t_take_anything_at_face_value.html>
  
inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #3 of 90: Jane Hirshfield (jonl) Mon 26 Jun 17 06:51
    
Jane Hirshfield (<jh> on the WELL) is currently offline, but asked
Inkwell hosts to submit this question for her:

Julie, I've known your story, and the way you've lived it through,
pretty well from our time together in the Writers Conference here on
the WELL, where you've been an invaluable voice and presence for
many years now. Still one thing that knocked me out at the beginning
of reading THROUGH THE SHADOWLANDS was the way that you move from
the immediate detail and immediate crisis out to the larger view.
I'm thinking particularly of the moment in the first chapter, where
you and your first husband go to sit up on the hill behind the house
you were building, right after your marriage ceremony, and in that
moment of respite in a high place, you not only found yourself
reflecting, as you write, on Geoff's bipolar illness – and your own
recognition that you couldn't tell the man from the illness – but
also the 35 million year old tectonic movements that created the
valley and range you two were sitting amidst.

I have a couple questions connected to that.

One is about telling the person and the illness apart. Over most of
the book, that's obviously something you realized you had to work
with now for yourself— finding a way to keep “core Julie” intact,
searching, evaluating, and emotionally whole enough, even in the
worst of times, to find a way to keep going. Can you say more about
that? And maybe a little about how and when writing this book became
part of that process?

The other question is a craft question. Could you speak a little
about finding the rhythms in telling this story of moving between
immediate experience and larger overview, and between information
and personal experience, each of which you've handled so masterfully
in telling this story?

Obviously those two questions are deeply connected, but they're
coming at the same thing from very different sides. There's living
the life and there's also structuring a book, and not everyone who
can do one can do the other.

(I'm going to be away from the internet when this conversation
starts, so I've asked for this to be posted for me, and I'll see the
answer when I get back in range. Thank you!) 
  
inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #4 of 90: Julie Rehmeyer (jrehmeyer) Mon 26 Jun 17 08:46
    
First, I have to just say what a thrill it is to be discussing this
book with you guys, whom I’ve shared so much of this journey with.
It’s slightly surreal, sitting down right now, answering Jane’s
question about the *finished book*!

The book starts with the story of building my house and my
then-husband’s mental illness both because that’s when I first
started getting sick but also because at that time in my life, I
lacked many of the skills that my own illness would lead me to
develop—and I suffered hugely as a result. At that point, I believed
that if I lived my life well, I’d get what I wanted—and conversely,
if I didn’t get what I wanted, it was because I must have made a
mistake. (Note that I was in my mid to late twenties.) When I so
dramatically didn’t get what I wanted, I tortured myself looking for
my error, trying to figure out what I needed to do in the future to
make life behave.

The result was that I couldn’t separate myself from my agony, just
as I couldn’t separate my husband from his illness.

I was forced to just keep moving forward without the answers I was
so burning for. And I discovered that over years, the experience
came to have a very different meaning. It was no longer about my
failure to produce the results I wanted. It was a sucky thing that
happened to me, and that changed me. It was the wind that sculpted
the juniper tree. My job wasn’t to force the wind to stop; it was to
channel its brutal force into beauty.

This knowledge was forming in me over the years as my illness
progressed. Obviously, I wanted to find solutions, but I didn’t see
my ability to find them as a test of my moral being, as I would have
when I was younger. So rather than resisting the illness and trying
to hold myself apart from it, I was able to lean into it, to view it
as an experience worth having, to allow it to shape “core Julie”
rather than erecting fortifications to protect “core Julie” from it.

What I found was that the less resistance I pushed against the
illness, the more I was able to engage with it creatively, and the
more I was able to feel like myself as a result. So, for example,
when I was at my sickest, I was often unable to turn over in bed,
and when I was well enough to go out to, say, do my grocery
shopping, I might find myself suddenly crippled, unable even to get
back to my car. During the long hours that I spent in bed, I hatched
an idea: I could train my 18-month-old hound-mix puppy, Frances, as
a service dog. She could carry a foldable scooter on her back —
essentially a skateboard with a handle and a brake — and when I got
crippled, she could pull me on it. The idea made me laugh: ludicrous
but clever, thoroughly Julie-ish. I found online resources to help
me train her, and that project was one of the things that kept me
from losing my mind during those long, frightening months.

Now for the craft question, about "finding the rhythms in telling
this story of moving between immediate experience and larger
overview, and between information and personal experience.” That’s a
hard one, because I think I did it largely instinctively, and
through trial-and-error: throwing stuff in higgledy-piggledy and
then rereading and feeling when it didn’t work and moving things
around. I was also blessed with many, many friends who were willing
to read for me, and their responses helped enormously in figuring
out where I’d gotten it wrong. I think it also helps that my mind
just kind of works that way: I’m always trying to connect my
immediate experience to my larger understanding of the world, so
it’s natural to do that in my writing.

One organizing principle for me was that I wanted the book to be a
really, really good read: I wanted the reader to be driven through
the story by an unstoppable emotional push. So the material that was
informative — for example, the story of the PACE trial, the largest
treatment trial in the history of chronic fatigue syndrome, which
turns out to be essentially a case of research misconduct — needed
to be told in a way that highlighted the emotional impact for me
throughout. I kept bringing readers back to my responses, or what
the trial meant in terms of my experience, or the impact it had on
how I viewed what I was going through. My hope is that even readers
who have no particular interest in ME/CFS or science will be
catapulted through those sections, and will end up learning a lot
while barely noticing that they’re doing so.

The hardest bit of the book in that regard was the material about my
mother. It was critical for giving readers the background to
understand some of the idiosyncrasies of my response to the illness,
but of course, it was outside the immediate narrative. It was also
challenging because her view of the world was so unusual, and of
course, I grew up steeped in it, so when I asked myself to describe
it, it felt a bit like asking a fish to describe water. That was a
section where I really relied on feedback from my readers — I just
couldn’t know whether I’d successfully translated between my
mother’s world and the ordinary world without hearing from
outsiders. Our own <dkline> was especially helpful in this—he read
draft after draft of this material, and he helpfully (and
aggravatingly!) kept telling me the ways it still didn’t make sense.
Initially, I wrote that material as one big chunk, and then I ended
up moving it around endlessly and ultimately breaking it up into
chunks that I spread throughout the book. 

I’m really glad to hear that for you, at least, I got the rhythm
right!
  
inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #5 of 90: Julie Rehmeyer (jrehmeyer) Mon 26 Jun 17 09:11
    
One other note about the particular passage you mentioned, when my
first husband and I went up to the hilltop on the morning of our
wedding: I initially wrote that material as an essay, which you can
read here:
<http://www.hcn.org/issues/43.12/wedding-in-the-shadowed-valley>.
And that essay grew out of a post I wrote here on the WELL!

I was thinking a bit more about what drove me to make that
particular move outward toward geology in that section. It partly
came out of the experience itself: I really do remember the profound
role the earth itself played at that moment. It also felt helpful in
expressing what happened for me right then, the miraculous shift I
felt from my personal fear and uncertainty to this larger, deeper
knowing, the way that our individual worries are beyond
consideration when you move to geologic time.
  
inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #6 of 90: Joe Flower (bbear) Mon 26 Jun 17 19:46
    
So, what we see in the book and in these first few questions is this
interweaving of emotion — life — and science. And the development of
science, and how it can go wrong, is as big a theme of the book as
your own journey. Tell us what you think about how emotion drives
science — and how science drives emotions.
  
inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #7 of 90: Julie Rehmeyer (jrehmeyer) Tue 27 Jun 17 09:26
    
That's a great question, Joe, and it really does go to the heart of
what I'm thinking about in the book.

The simplistic story is that science is free of emotions, or even
opposed to them -- that it's the infallible way of cutting through
all that silly, misleading emotional stuff to access Truth. And
there's some truth to that: Part of what's so valuable about science
is that, done right, it *is* a tool that can be tremendously helpful
in preventing us from being misled by our own desires, helping us to
resist our own biases. 

Here's an example of that: After I became convinced that mold was at
the root of my illness, I knew thatI had become so invested in that
hypothesis that I was filtering all my experiences through it,
seeing the world through mold-colored glasses, as it were. And while
I found the evidence for my hypothesis really compelling, with
exposures reliably leading to reactions, I had to admit that there
was a possibility that I was deluding myself, focusing only on the
evidence that supported my theory and spinning elaborate stories to
explain away the evidence that didn't. Or, perhaps I was
experiencing a nocebo effect, the placebo effect's evil twin: Maybe
my expectation that exposures would hurt me was enough to create
real reactions—but it wasn't the mold itself that was doing it.

So at that point, I turned to science, and I performed a rigorous,
double-blind, placebo-controlled trial of my ability to detect mold.
I bought two identical packages of washcloths and spread the
washcloths in one of the packages around a moldy house while keeping
the other package uncontaminated. A friend randomly chose either a
contaminated or uncontaminated washcloth and handed it to my
husband, who didn't know which one it was. My husband then brought
the washcloth to me, and I held it to my nose and waited to see if
it would cripple me. I'd declare it contaminated or uncontaminated,
take a shower to wash away any traces of contamination from my body
and restore my ability to walk (yes, bizarrely, showers had a
miraculous impact), and then test the next one. To my astonishment,
I didn't get a perfect score -- I was correct on 10 out of 12 with
one false positive and one false negative. But when I did the
statistics, I saw that that that was still good enough that I would
have had only a two percent chance of doing as well if I really
couldn't detect mold at all. (I would have liked to do further
testing, but I decided it was too hard on my body.)

So science can be super valuable in helping us guard against our own
biases, seeing the world more objectively.

But the reality is that the institutions of science are carried out
by real live emotional human beings, and unsurprisingly, the reality
often doesn't live up to the ideal. My book is full of examples of
this, and perhaps the most striking is the PACE trial, the largest
treatment trial in the history of chronic fatigue syndrome, which
claimed that cognitive behavioral therapy and graded exercise
therapy are effective treatments that lead to "recovery" in 22
percent of patients. It was a big, expensive trial, published in The
Lancet, ballyhooed by the press. It influenced public health
recommendations around the world, and there's a reasonable chance
that its findings are the only thing your doctor knows about ME/CFS.
And it's a bunch of bullshit.

I told the story in this piece for STAT News:
<https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/>. The essence of it, though, is that the researchers were determined to find that the treatments were effective, and they tortured their data to be able to claim they were -- even though the reality is that the results were pretty pathetic. But the researchers had invested their careers in this theory. Emotionally, it would have taken tremendous strength for them to say, "Whoops! Looks like these treatments aren't so great after all. Sorry!"
  
inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #8 of 90: Julie Rehmeyer (jrehmeyer) Tue 27 Jun 17 09:32
    
Another direction my thoughts go in answer to your question, Joe, is
that while the rational analysis of science is a fantastic tool for
accessing truth, it's not the only tool. I was determined to use
every resource I had available to me in figuring out how to deal
with my illness, and as important as science was in that, it wasn't
the only resource I turned to.

Another key approach for me was spirituality. By that, I don't meant
that I believed that a great old man in the sky might intervene and
save me if I asked nicely enough. My own experience of spirituality
addresses the aspects of the world that are vastly bigger than we
are, the things that we can faintly perceive but can’t contain, that
which evokes reverence in us. It’s the hidden structure that
underlies the world.

In just the same way, mathematics is a hidden structure that
underlies the world. (Remember that I earned a master's in math at
MIT.) And thinking on a spiritual level felt very similar to
thinking about a math problem to me. The process of solving a deep
math problem is highly intuitive. When you write out your proof at
the end, you spell out the logical connections, but that’s not the
process of discovery. Instead, you in large part feel your way to
the new idea, based on an intuition you’ve built over years. By
working on examples and just learning lots of different kinds of
mathematics, you develop a sense of how things tend to behave. You
get a good sense of what should be true, as if you’re perceiving a
kind of invisible structure within mathematics itself, and you can
then feel your way along these great beams and columns to find your
way to rooms that have never been visited before.

Approaching my illness on a spiritual level meant many different
things for me. For example, I believed that illness could be an
experience worth having, that the shadowlands could be a place with
surprising riches. I also never allowed myself to view my body as
misbehaving; instead, I saw it as my partner, showing me its needs
through various symptoms—the only language it had available. My
spiritual orientation also meant that when rational, straightforward
paths were all closed to me—when I was living alone, often too sick
to turn over in bed, out of medical options, running out of money,
and with little family to turn to—I didn’t feel entirely without
hope or resources. By deeply paying attention to my experiences and
allowing my intuition to keep working, I had hope that I’d still
find a way through.

And I believe that spiritual approach was key in helping me find my
way to some answers to my health issues.
  
inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #9 of 90: Idea Hamster On Speed (randomize27) Tue 27 Jun 17 10:14
    
I have not finished the book yet, but have followed the story as it
unfolded in Writers. (Which is not nearly a complete picture, so buy
the book.)

I wonder, at this point, could you get other mold-sensitive people
to repeat your washcloth experiment, and perhaps establish a base
line a scientist could use to get funding?

I also caught where the doctor specializing in HIV was working with
CFS patients because of similarities between the two illnesses. Do
you feel that progress in either field could help the other?

Finally, have you, or other CFS patients tried to sort among the
patients what works and what doesn't? For example, supplements work
for Group A and B, mold avoidance works for Group B and C. Do you
think that perhaps there are multiple versions of ME/CFS, as
evidenced by the lack of a single effective treatment? 
  
inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #10 of 90: Administrivia (jonl) Tue 27 Jun 17 11:19
    
Readers of this conversation who are not members of the WELL can
participate by sending comments and/or questions to inkwell at
well.com. Hosts of the conversation will post those as they come in.

Short link to this discussion: http://bit.ly/shadowlands-book
  
inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #11 of 90: Julie Rehmeyer (jrehmeyer) Tue 27 Jun 17 12:11
    
A patient tried to organize an effort like this a few years ago,
with patients sharing information and tracking their symptoms and
treatments, in the hope of using that data to spur research. It was
called HealClick, and patients loved it, but the guy running it
couldn't get it to fly financially. I'd really love to see something
like this brought to fruition.

Ron Davis is getting interested in researching mold, in response to
my book, actually. He's pretty amazing:
<http://stanmed.stanford.edu/2016spring/the-puzzle-solver.html>

The similarities between ME/CFS and AIDS have led some folks to call
ME/CFS non-HIV AIDS, and it's also fueled the idea that ME/CFS might
be caused by a retrovirus. At this point, the notion that it's a
straightforward pathogen infection seems unlikely -- for one thing,
the Dubbo studies showed how it could be triggered by particularly
severe responses to a number of different bugs. (See here:
<https://www.healthrising.org/blog/2014/11/22/infections-genes-chronic-fatigue-
syndrome/>.) Still, unknown retroviruses could act as a trigger for some patients.

The biggest similarity between AIDS and ME/CFS is that they both
involve immune abnormalities that have been acquired later in life.
The wonderful specialist I saw, Nancy Klimas, was an early AIDS
researcher and clinician, and ME/CFS patients came to her because
they were convinced their immune systems were messed up. She tested
them, and they were right. The most striking and consistent
abnormality was that their natural killer cells (which go after
cancer, among other baddies) barely functioned. Gradually, Klimas
came to be one of the top folks studying ME/CFS.

My guess, though, is that any similarities between AIDS and ME/CFS
don't go a whole lot deeper than that. The really exciting recent
research has been on metabolic and mitochondrial problems, and I'd
be putting my money on more findings in those directions.
  
inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #12 of 90: Scott Underwood (esau) Tue 27 Jun 17 12:58
    
Reading along here and I'm still in the book as well. Though I saw some of
this unfold periperally, it's almost overwhelming to contemplate what you've
gone through. Even so, as you mention above, you've come out of this a
strnger, more capable human, so there's something almost gratifying about
that as a story.
  
inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #13 of 90: Virtual Sea Monkey (karish) Tue 27 Jun 17 13:56
    
Julie, are you seeing any convergence on a more comprehensible
taxonomy of ME/CFS symptoms, either from professionals who study the
syndrome(s) or from fellow sufferers? Does the world make any more
sense today than it did five years ago?
  
inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #14 of 90: Ted Newcomb (tcn) Tue 27 Jun 17 14:54
    
First of all, kudos to you, your incredible fortitude and courage
and documentation of your journey will be a help to many.

There has been a lot of talk these pasts years about "being your own
health care advocate". Could you speak a bit about how that process
unfolded for you?
  
inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #15 of 90: Ted Newcomb (tcn) Tue 27 Jun 17 14:54
    
Lots of slippage :)
  
inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #16 of 90: Paulina Borsook (loris) Tue 27 Jun 17 16:30
    
[frontpage of the well should be changed to reflect that this is the
current book under discussion, and not that of ed ward]
  
inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #17 of 90: Julie Rehmeyer (jrehmeyer) Tue 27 Jun 17 17:02
    
Thanks for joining in, everyone!

<karish>, I'm not sure I'd say we've made progress in terms of a
comprehensible taxonomy of symptoms, but a LOT has changed overall
in the last five years. Five years ago, the PACE trial reigned
unquestioned, with essentially no doctors questioning the view that
the best treatments for the disease were cognitive behavioral
therapy and graded exercise therapy. None of the researchers in the
US agreed with that, but they weren't making a stink about it
either. The NIH had zero interest in the disease. There was
literally no good journalism about it, and the only researchers
seriously interested in the disease were a few dedicated
specialists. And we had no particularly promising research leads.

All that and more has changed. The journalist David Tuller published
a devastating takedown of the PACE trial and has galvanized the
scientific community into objecting to that horseshit.
(<http://www.virology.ws/2015/10/21/trial-by-error-i/>) The quality
of journalism overall has improved dramatically, with Tuller, me,
and Miriam Tucker writing about the disease regularly and some other
non-specialist journalists actually doing decent work. 

 The NIH has gotten seriously interested in the disease, increasing
funding (by a pathetically small amount, but it's still a move in
the right direction) and sponsoring an in-house study. (And
recently, the head of the ME/CFS program there said that the
research budget should be 10-20 times higher, though there's no
indication they're going to make that happen.)

Several extremely high-powered researchers are now doing top-notch
work (though they're hampered by the lack of money), and we've got
some really interesting findings. The two areas I'd highlight most
are work showing that a cancer drug, rituximab, produces remissions
for some patients and a collection of studies pointing to metabolic
and mitochondrial abnormalities. Those latter are too small for me
to put a lot of weight on any single one of them, so I won't report
the details -- but we're seeing a bunch of interesting things in
that general area.

And the patient community has become much more organized and active.

Your question, <karish>, may be pointing in this direction, too:
Given how much symptoms can vary, it seems likely that there are
distinct subgroups of patients. So you may be asking if we've made
progress in identifying those subgroups. There was a recent study
that claimed to do so, but I didn't hold it in very high regard.
Furthermore, I don't think we're likely to find clean, tidy
subgroups of patients -- I think the reality is more complicated. We
tend to think of disease in a rather simplistic way, that a single
cause breaks a single thing in the body, and that causes a single
disease. But I think what we're seeing with a lot of chronic
diseases is that there are multiple triggers, and they're probably
breaking more than one thing in the body. And depending on the
particular collection of triggers and broken things, the illness
will manifest as more like ME/CFS or fibromyalgia or Lyme disease or
lupus or mysterious-autoimmune-disease-without-a-name. But there are
lots of overlaps and muddy areas, and I don't think those are going
to go away. 

I do think it's helpful to look at patients where things seem to be
simpler -- patients, actually, like me, because for me, it seems
that mold was really THE thing keeping me sick (though I do think
there were likely multiple triggers, not just mold.)

But overall, I'd say we've made little progress in teasing the
threads of that knot out.
  
inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #18 of 90: Virtual Sea Monkey (karish) Tue 27 Jun 17 17:08
    
Yes, I meant to ask about all those things. Thanks for the summary.
  
inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #19 of 90: Julie Rehmeyer (jrehmeyer) Tue 27 Jun 17 17:12
    
And Ted, thanks for saying that. Honestly, though, it feels like a
privilege and an honor to be able to do this work. Both to have good
enough health to make it possible, and to be in a position where I
can do something that feels like it matters.

I'd go a step beyond being your own healthcare advocate. Being an
advocate, to my ear, implies that you're working within the medical
system and pushing for it to work better for you. But for an illness
like chronic fatigue syndrome, the medical system has almost nothing
to offer (except for a few renegade doctors, though the truth is, I
wouldn't simply turn my health over to any of them). 

What I did was to accept total responsibility for finding my own way
with this illness. I was dragged, rather unwillingly, into seriously
considering ideas from the patient community that I thought were
utterly cracked -- like mold and detox. 

I'll add more on this later -- gotta run now.
  
inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #20 of 90: Paulina Borsook (loris) Wed 28 Jun 17 10:11
    

julie, there does seem to be a huge overlap between people who are mold-
sensitive and people who are chemically-sensitive; many ppl have both
sensitivities to some degree.

do you have any physiological intuitions as to why that might be? i have
felt that at core this is a nervous-system dysregulation...

as for the mold hypothesis and ME/CFS  it sure makes sense to me. the one
time i came down with it was after spending a nine months in moldy swampy
charleston south carolina...
  
inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #21 of 90: Pamela McCorduck (pamela) Wed 28 Jun 17 13:15
    
When you say you've taken responsibility, I think you've taken it
along so many dimensions. I know you were referring directly to
examining research reports, but I've just reached the point in the
book where you return to Santa Fe alone from Berkeley, and face the
reality that nobody is there to help you when you slip. It's a
frightening responsibility to take on.
  
inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #22 of 90: Ted Newcomb (tcn) Wed 28 Jun 17 13:46
    
Julie, thx...yes I think being proactive about your 'health care'
includes the whole person - physical, spiritual, mental and
emotional.

Having just come out of the gauntlet of a year and one half on
Medical Disability I think the term "health care" as used to
describe our system in the United States is an oxymoron. I found
very few who cared and very few interested in my health; but they
would prescribe! Most of the time I felt like nothing was going to
be cured or resolved, just managed with drugs and medical marijuana.
And maybe that works for people or is the best they can get. But I
wanted to be well. So I kept rejecting those solutions and kept
seeking wellness solutions. 


I ended up with a mix of about 50% excellent doctors and nurse
practitioners that I found and another 50% outside of "the system". 
Quite the learning experience. Happily back in the pink now and
moving off disability. Hope never to have to go through that again.

I realize that as I get older I may not be so fortunate and will
have to learn how to compromise with my aging body and resulting
complications. But, for now, at least, I'm kicking.
  
inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #23 of 90: Julie Rehmeyer (jrehmeyer) Wed 28 Jun 17 17:30
    
Paulina, yes, absolutely, there are huge overlaps between mold
illness and MCS. I never dealt with chemical sensitivities myself --
a huge blessing! -- but that's fairly uncommon for moldies. 

The general wisdom among moldies is that mold tends to be the bigger
problem, and that if you do enough to deal with mold (i.e., a whole
hell of a lot!), the chemical sensitivities will vanish without
taking extensive avoidance measures. But it certainly seems like
there are plenty of MCS folks who disagree. One possible explanation
for the disagreement is self-selection: Perhaps mold is more central
for some MCS-ers and not for others, and the ones its true for tend
to consider themselves moldies. and those it isn't true for don't.
That kind of self-selection is one of many reasons it can be hard to
extrapolate from patient experience.

In any case, it's clear that the overlap is really huge, as you say,
and the core mystery is pretty much the same in the two illnesses:
Yes, we know that mycotoxins can be bad for you, and we know that
many manufactured chemicals can be bad for you -- but how can they
be that bad in such tiny doses? We really haven't figured that out
at all, and scientific inquiry seems to have mostly stopped at
"Because the patients are crazy."

In the case of mold, my guess is that the neurological and immune
systems are both central. Our innate immune system comes
preprogrammed to recognize elements of the skeleta of mold spores as
invaders, inciting an inflammatory response. Cheryl Harding of
Hunter College has done some really interesting work on this,
tracking how in mice that are exposed either to the skeleta of the
spores or to intact spores that are coated with mycotoxins, and
she's found neuroinflammation either way. And she's shown behavioral
changes in the mice that track with the neuroinflammation. I could
easily imagine a similar immune hyperreaction being relevant to MCS.

I also discuss in the book how I think there's a component of it
that is a trained neurological response as well. In doing extreme
mold avoidance, you're focusing on the tiniest sensations as signs
that you're being exposed, and then you're getting the hell out of
there. An excellent strategy for giving your body a hugely needed
break -- but in doing so, you're practicing reactivity, in just the
same way as you practice scales on the piano. When you practice
scales on the piano, your fingers start to move faster and more
surely. When you practice reactivity, your responses come faster and
more surely, too. Note that I'm not saying that you're freaking out
and the freak-out is increasing the response -- you could be cool as
a cucumber and the same thing would happen. And in the book, I
describe some techniques I developed to help my brain un-learn that
response.

But that learned response element is clearly not the whole thing.
Mold made me sick long before I had a clue that mold had anything to
do with it.

Another possible explanation for hypersensitization is mast cell
activation syndrome, which you can essentially think of as a
particularly severe form of allergy that doesn't show up on ordinary
allergy tests. It's only come to medical attention in recent years
that mast cells can go haywire in these unusual ways, and it's
beginning to be studied. It's a more reasonable hypothesis for folks
with generalized MCS and less so for someone like me, who only
reacts to mold.

But basically, we need to figure out a whole lot more about all
this.
  
inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #24 of 90: Julie Rehmeyer (jrehmeyer) Wed 28 Jun 17 17:36
    
Ted, I'm so glad you've found your way through! 

> I think the term "health care" as used to
describe our system in the United States is an oxymoron.

No kidding. It's insane for everyone involved. 

Sounds like you took a lot of responsibility for your own health,
and that was key for finding your way. I do think it's essential for
almost everyone interacting with this damn system of ours.

And yes, Pamela, that's really true: The process of dealing with
this illness forced me to become self-responsible in so many ways.
For one thing, it really forced me to face the fact that life
doesn't owe me a damn thing. It isn't fair, and it's not even
supposed to be fair. It just is, and it's our job to deal with it,
whatever it is.
  
inkwell.vue.497 : Julie Rehmeyer, Through the Shadowlands
permalink #25 of 90: Lena via lendie (lendie) Wed 28 Jun 17 22:06
    

What role do you feel Frances the dog has had in your health and healing?
  

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