Friday, January 19, 2018

Sexism stunts medical progress

Rosario: Sexism stunts medical progress

Unrest, a new documentary, explores the stigma surrounding chronic
fatigue syndrome.
Isabella Rosario
Jan 18, 2018

Last semester, I began experiencing unrelenting fatigue and muscle
pain like I had never felt before. For weeks, I could barely go to
class or even stand to do the dishes. I begrudgingly made an
appointment at UI Student Health & Wellness.

The day before my appointment, I went down the rabbit hole of Googling
my symptoms. One result I came across was chronic fatigue syndrome.
When I brought up the possibility of the condition at my appointment,
the doctor chuckled and told me that it was not a real illness. He
said my symptoms were most likely the physical manifestation of
depression or anxiety — i.e., it was all in my head. He gave me a
handout for University Counseling Service and sent me on my way.

Soon after, I visited my primary-care doctor back home, tested
positive for pneumonia, and was promptly given antibiotics. So much
for "all in my head."

Fast forward to last week's PBS release of Unrest, a documentary by
Jennifer Brea. She was a Harvard Ph.D. student preparing for her
upcoming wedding when she was struck with a high fever. After the
fever broke, Brea experienced dizziness, recurrent infections, and
debilitating neurological symptoms. Her neurologist diagnosed her with
conversion disorder. He said Brea's physical symptoms were in response
to some psychological trauma she may not even remember.

Brea was eventually diagnosed with myalgic encephalomyelitis, more
commonly known as chronic fatigue syndrome — a very real illness twice
as common as multiple sclerosis and recognized by the World Health
Organization since 1969. Directing from her bed, Brea interviews
people from around the world with the condition, which causes fatigue
that does not improve with rest, memory problems, widespread pain, and
more symptoms that range in severity; 25 percent of sufferers are
either housebound or bedbound for long periods. And yet, they are
continually dismissed and disbelieved by doctors who psychologize
their symptoms—especially if they are women.

I hadn't heard of conversion disorder prior to my appointment at
Student Health, or at least I thought I hadn't. It was originally
called hysteria, which Plato described as women's uteruses "blocking
passages, obstructing breathing, and causing disease." In the 19th
century, Freud dropped the uterus component and instead theorized that
people could subconsciously convert psychological pain into physical
symptoms — which is exactly how my first doctor explained my symptoms.
Today, hysteria — renamed "conversion disorder" — is diagnosed two to
10 times more in women than in men.

And so it comes as no surprise to me that ME/CFS — an illness two to
four times more common in women — is not taken seriously by the
medical community. It comes as no surprise to me when I hear stories
from female friends who have had doctors dismiss their fevers or
coughs as stress-related. Multiple sclerosis was diagnosed as
hysterical paralysis until CAT scans revealed brain abnormalities. Why
are we repeating this narrative with ME/CFS almost 50 years into its
recognition by the World Health Organization? Why is it that when
doctors do not immediately have the answers, they assume an absence of
biological cause?

I do not believe the medical community is full of raging sexists.
Rather, my experience and viewing of Unrest illustrated to me how
incredibly human doctors are — how they are susceptible to unconscious
biases and sexism in the same way all of us are. And how they, in
congruence with society, would rather offer easy explanations for the

As we embark on a new semester, I hope we can open our minds to the
diversity of others' experiences and the class material presented to
us. With persistent curiosity, our generation can be the one that
looks deeper than hysteria and other flawed explanations for what we
do not yet understand.

Tuesday, January 16, 2018

NIH Striving to Avoid False Hope

NIH Striving to Avoid False Hope in Chronic Fatigue

Director Francis Collins, MD, PhD, talks about his agency's priorities

by Joyce Frieden, News Editor, MedPage Today January 16, 2018

BETHESDA, Md. -- The National Institutes of Health is trying hard to
bring real hope -- not false hope -- to patients with myalgic
encephalomyelitis/chronic fatigue syndrome (ME/CFS), NIH director
Francis Collins, MD, PhD, said during an exclusive interview with
MedPage Today.

"Five years ago ... there was this big excitement that there was a
retrovirus that was turning up in people with CFS, and initially it
didn't appear to be in people who were unaffected," Collins said
Friday during an interview at the NIH main campus, at which a
communications staff member was present. "It was a funny retrovirus
that had only been seen in cultured cells in the lab, and maybe in
mice, [and it was] called XMRV."

"It was really exciting because it was a retrovirus, and we have drugs
for retroviruses! It got published in Science to great excitement, but
then almost immediately other researchers looking at very similar
patients said, 'We don't see this' or maybe 'We see it in people who
don't have the disease,'" he continued. "We mounted a careful
multi-site study funded by NIH with blinded samples to try to see
[whether] this [held] up and sadly, it did not. That was such a blow
to a community of suffering people who thought, 'Finally, they're on
to something.'"

Collins said he has been "greatly moved and troubled" by the stories
of CFS patients, "especially when many of those stories start with
people who are highly active, and many of them fairly athletic, and
some illness that sounds viral, like a really bad flu, hits them, but
they don't get better ... Many of them are unable to resume normal
activities and end up bedridden for months or years."

In September, NIH awarded $7 million in grants to three clinical
centers and a data coordination center to continue ME/CFS research.
"Some people have said, 'Your three centers are all doing the same
things,'" he added. "Yeah, that's intentional; we want to see
immediately if something looks like it's promising, is it promising
really, or another false positive? We've had too many of those and we
don't want to make that mistake again."

In addition, "I moved the program out of the place it was at NIH,
which was at the Office of Research on Women's Health," he said. "It
is true that women are affected more than men, but that was seen as
not a particularly important place for an important disease to be."

Collins asked Walter Koroshetz, MD, director of the National Institute
of Neurological Disorders and Stroke (NINDS), to head up the NIH's
research effort, and NINDS senior investigator Avi Nath, MD, "to start
a protocol in our clinical center to bring people with this disease
for an intense 1 or 2 weeks of just looking at every possible cause.
And that's led to a big uptick in the amount of research that's going

Although the medical community has been criticized for not taking
ME/CFS seriously, "it's very hard for me to see how [that criticism
is] fair when you hear stories of people who've gone rather suddenly
from a full life to bedridden status -- something dramatic happened
there," said Collins.

He added, however, that "there are problems [in that] CFS has become
such a blurry diagnosis, that in there amongst hundreds of thousands
or millions of people who carry that diagnosis is a whole
heterogeneous group and there may be individuals ... who have
something else entirely or even people who are suffering from
depression and are therefore feeling fatigue for that [reason]. I
think that's added to the difficulty that the medical care system has
had coming to grips with this as a real disease that has a desperate
need for new treatments."

Thinking Big on Cancer Cures

Collins also expressed excitement over the additional funding --
granted under the 21st Century Cures Act -- that his agency will have
for the "cancer moonshot" project. "We're thrilled to have the
opportunity to push this even faster," he said. "It builds upon a
foundation of cancer research that's been going on for a long time ...
[It gives us] about $1.6 billion over 6-7 years to add to what was
already available for cancer research."

What is NIH doing with that money? "We convened 2 years ago a group of
highly expert cancer research visionaries -- from academia, the
private sector, and advocacy [groups] -- and said, 'OK, guys, what do
we need to do that we're not already doing? Think big, think bold;
don't worry about risky projects if they can pay off,'" he explained.
"They provided a blueprint of where we needed to go, a series of about
28 initiatives. Those have been our guiding documents to crank this

Immunotherapy is one of the big areas the researchers are focusing on,
he continued. "You can't help but look at some of the amazing success
stories of cancer immunotherapy of people who had widely metastatic
disease and are now cured without going, 'Wow, we are really onto
something!' -- after all of these years of trying to figure out
whether this could work. For leukemias that used to be refractory, and
with lymphomas that failed chemotherapy, immunotherapy is looking
really good."

"The challenge is, how do we take those successes and expand the
success rate to solid tumors where this just really hasn't paid off
yet -- pancreatic cancer, colon cancer that's already metastasized,
breast cancer, prostate cancer?" Collins said. "But cancers are very
clever and they hide their abnormal proteins, telling the immune
system, 'There's nothing to see here.'"

"So we have to help the immune system recognize trouble, and that's
led to a host of these really dramatic new technologies like CAR-T
cells, now approved for two different applications by FDA but still
not yet for solid tumors; that's the big frontier. But it ought to be
possible to do that ... and that's where a lot of the moonshot money
is going."

Working with Commercial Partners

One way to speed up these therapies is partnership with industry, he
said, "but they have the same frustrations about why it doesn't work
... So we need to have a better biological understanding of that
process, basically biomarkers that will be predictive of whether a
particular immunotherapy is going to be successful or not. We don't
have those."

"After talking to industries that are most engaged over the course of
more than a year, this has developed into a formal partnership: the
Partnership for Accelerating Cancer Therapies, in which 11 companies
all agreed to take part and contribute $5 million each ... so they're
putting money on the table, and partnering with NIH with a very
explicit set of goals," Collins said. That partnership launched in

As great as some of the new therapies are, sometimes they stop working
after 9-12 months, so researchers want to know "What's the mechanism
of resistance, and how can we avoid it?" said Collins. "Do we need to
do the same thing we do with HIV or tuberculosis -- hit them with two
or three drugs at once instead of one at a time? Cancer may have that
same propensity to develop resistance if you don't have that full army
at work, so combination therapy is very much of interest as well."

As for the word "moonshot," "It is helpful to have something that
people can immediately identify -- 'Oh, that's what you're talking
about!'" he said. "And if it sounds inspiring, exciting, promising,
that's even better. There were discussions about whether that's the
best label, but that's what [former Vice President Joe Biden] wanted,
and it's in the legislation, so I guess we're going to stick with it."

Precision Medicine ... for All of Us

Another term that gets a lot of discussion at NIH is "precision
medicine." Collins recalled that he wrote a book in 2010 called The
Language of Life: DNA and the Revolution in Personalized Medicine.
"That was the term I was using at that point."

"Then there was a National Academies [report] that looked at the
promise of all this," he said. "They didn't like 'personalized
medicine' because they thought it sounded like every decision, every
drug is going to be just for that one person, as opposed to
recognizing that if you take a million people, maybe for 50,000 of
them this is going to work and 30,000 need something else. So ... they
liked 'precision' better. That's the idea of taking a
one-size-fits-all approach, which most of medicine has been, and using
all the data available to be more precise about what's going to work
for that particular person."

"Ultimately, of course, one wants it to mean that all of us have a
perfectly designed program for preventing illness that we can follow
and it will keep us healthy, and if we're still unlucky enough to get
sick, there's a precise intervention available that's going to make us
better," Collins said. "And that is the goal -- I will not step away
from that goal, but we're certainly not at a point where we can claim
that's the case."

However, because the current initiative involves a nationwide program
that the NIH is trying to get a million people to join, "I don't think
we want to call it the 'Precision Medicine Initiative' -- we've got to
have a name that's more descriptive of what we're trying to do,
[which] is to learn as much as we can from as many willing partners as
we can. [So the name is] 'All of Us,' and I think we've done a good
job of branding it that way."

"A secondary meaning [is] 'all about us' in terms of of our medical
experiences, environmental exposures, diet, exercise, things we care
about, and things we don't care about," he continued. "We want those
million people to feel like they have embraced this program, that they
want it to succeed ... that they're going to get a lot of information
back about themselves, and that they're excited to be part of this
national adventure."

Collins is hoping that the results of the initiative won't take
decades to implement in practice. "One thing that will help here is
that at least half of the enrollees, as we currently imagine it, are
going to be involved in health provider organizations that are both
helping them engage in the research but are also their caregivers."

"That setup will be particularly relevant as far as getting access to
electronic health records, blood samples, their history of
medications, and so on, because they have those systems in place," he
said. "But we want everybody in the United States to be able to take
part if they want to, so there's also a direct volunteer pathway for
somebody who doesn't happen to be in one of those health provider
organizations, to call an 800 number, or go to the Web and sign up and
also get involved."

"We are very determined to make this a highly diverse million people,
in terms of age, gender, geography, race, ethnicity, and socioeconomic
status -- we want this to be the kind of view of the nation that will
also teach us things about health disparities."

Part of that work involves encouraging minorities to participate,
which has been an issue in the past, Collins said. "We've worked
really hard on trying to understand the reasons why that has been the
case, and how this project could be presented in a way that is

"We've brought on board a chief engagement officer, Dara
[Richardson-Heron, MD], an African-American woman, and she has been
fantastically wise about how to build those relationships in a
trusting way, and recognizing this doesn't have an easy history and we
need to be totally aware of that," he said. Part of the outreach
involves working with community health centers, whose patients are
typically of lower socioeconomic status, to encourage those patients
to participate.

To ensure that the All of Us project will launch properly, NIH has
been beta testing it since last May, Collins noted. "We've enrolled
over 10,000 people as test subjects to see whether the questionnaires,
the access to electronic health records, the security systems, the
blood samples -- whether everything is moving the way it should as we
bring online all these enrollment centers all over the country ... and
it's looking really good." As for a launch date, "We're saying in the
spring -- maybe by next month we'll be at the point of being able to
settle on a [specific] date."

Making sure the participants reap the benefits from the study --
especially if it results in high-priced treatments -- is an issue, he
said. "We can't, with this one study, solve [the problems of] our
healthcare system."

Collins noted that a New York Times article pointed out that Congress
seems interested in supporting research studies but can't agree on how
to make sure people have access to healthcare. "We can't solve that
but we can certainly try to provide for people to have access to this
study, which is going to give them information back about themselves."

Monday, January 15, 2018

Unrest is on Netflix

Jennifer Brea:

The time is here! Unrest is now available on @Netflix! Grab your
popcorn, grab your friends, and get ready to stream now on your
computer, smartphone, or TV.
#UnrestFilm #UnrestNetflix

UNREST is now on Netflix

What??? We are on Netflix? That's right.
You can now tell your family and friends that all they have to do to watch Unrestis log onto Netflix and hit play!
We are (or will be) available in 190 countries around the world and twenty languages. This means even more people can see the film and join the movement for equal access to research, treatment and care.
But being on Netflix doesn't guarantee views. And watching Unrest is only the beginning. To transform awareness into action, we need to organize! Here are three ways you can help.


Shout our Netflix launch from the rooftops. Share on your social networks and let's get our stories seen and heard! You can find images and sample tweets in our social press kit.


Watch Unrest again or leave a review. We'd love to get Unrest into Netflix's "Trending Now" section today so casual browsers can stumble upon it and take a look. Views and reviews help. We can do it – with your help!


There's still time to sign up and organize a house party to educate friends and family, and take action together. And now with Unrest's availability on Netflix, it's never been easier!
Watch on Netflix
Don't have Netflix? US residents can still watch Unrest for free on PBS's Independent Lens website through January 22nd or go here for even more ways to watch.

We've come so far together – and this is JUST the beginning. Thank you for your support, your sharing, and your activism. Together, we can change the world.

Jennifer Brea & The Unrest Team
P.S. - Are you ready to show everyone it's #TimeForUnrest by wearing a shirt, hoodie, button, or sporting a tote? Why not grab a poster while you're at it? But hurry-- Unrest merchandise is selling quick! All proceeds from our store help to sustain our global campaign.