Jennifer Brea🦒 Profile picture
Aug 14, 2018 106 tweets 35 min read Twitter logo Read on Twitter
The heavy-handed (totally out of context) physician commentary on the cases of patients they have never seen or interacted with is so irresponsible. #Afflicted
I have *never* heard of some of the doctors commenting on Jamison's case. This means they don't regularly see ME patients, don't research the disease, and have zero clinical or research expertise. #Afflicted
They filmed at a Stanford symposium that included top researchers from around the world, yet decided to use totally unrelated, nonexpert interviews to comment on Jamison's case in order to convey a POV that fit their narrative. #Afflicted
Any shots/interviews that do take place at Stanford aren't even chyroned, I guess because that might also complicate the narrative? #Afflicted
Oh @NotTheWhiskey when I heard Friedman and the other doc talk about your car accident and imply emotional trauma, the first thing I thought was, "but what happened to your head/neck?" #Afflicted
(We're finding that a subset of us have structural issues in our brain/neck whether Chiari malformation, craniocervical instability, spinal stenosis or cerebral venous stenosis) #Afflicted
Oh Dr. Gordon, I know you mean well but there is no evidence that the "vast majority" of patients with "chronic fatigue" don't have brain inflammation (again, the #Afflicted team would have been helped here by talking to a neuroscientist).
What we do know is that 100% of the #MECFS patients in this study (…) had brain inflammation. Autopsies have found evidence of chronic inflammation in the spine. We need more research but there is absolutely no proof to support this statement. #Afflicted
More precisely, there is some proof of the positive but no definitive proof of the negative. It's subtle but precision matters. #Afflicted
"They don't want to be sick, but in an attempt to solve the problem, they've taken on the sick role and they've crowded out everything else in their life." says @raf_ideas #Afflicted
This idea was concocted by someone who has clearly never been seriously ill in their lives. Does anyone know the origin? It's one of those annoying medical aphorisms that I can only assume can be traced to Freud but that's just a guess. #Afflicted
What's so infuriating about this is that it can be interpreted to mean that somehow those of us who can't walk, talk or tolerate light, sound, or human touch are somehow luxuriating in our inhuman, unrelenting suffering. #Afflicted
When the reality is ALL of us fight hard to carve out even a sliver of normalcy, of whatever it is that made us who we once were in the midst of all of this. #Afflicted
"I had a few patients who identified so much with their illness that they really weren't willing to be cured" – unnamed dude #Afflicted
So what I"m getting from this is that most of the patients have undiagnosed neurological issues, likely due to infection, inflammation/autoimmunity, or structural (neurosurgical) issues #Afflicted
Oh god. The great crime really is the totally context-free intercutting of "experts." It's sentence by sentence frankenbyting. #Afflicted
I don't know who anyone is, what their credentials are, why I should or should not trust them, or if what they are saying in the context of the sequence is actually what they meant to convey in the context of normal human speech. #Afflicted
I'm completely at the mercy of the directors. It would have been much more honest if they had just written all this as their own VO as it's clear that the expert interviewees are simply their mouthpieces. #Afflicted
I'm completely at the mercy of the directors. It would have been much more honest if they had just written all this as their own VO as it's clear that the expert interviewees are simply their mouthpieces. #Afflicted
Also, I am in Ep 3 and other than Mark Davis, who said nothing scientific, I have yet to trip over a single scientist #Afflicted
Jake's dx is chronic Lyme. He clearly has debilitating neurological sx. His father is afraid he's not pushing his son enough to fight through his illness and shares a thought that crossed his mind: what if he took Jake out of his room and threw him in an ice-cold pool? #Afflicted
Fun fact: there's a case of a young boy in Wales with ME who, many years back, was forcibly institutionalized, the idea being that his symptoms were due to false illness beliefs. #Afflicted
In order to get him to move, staff in the psychiatric ward threw him a pool, face down, without water wings. Too weak to swim, he sank underwater and had to be rescued. #Afflicted
Getting a little tired of recurring creepy/ominious music and the constant selection/repetition of words like "high", "weird", "mind", "crazy", etc. I wish I could have a full transcript so we could word cloud it. #Afflicted
"We have a saying in medicine that when you hear hoofbeats, the first thing that should come to mind is a horse, not a zebra." This too cute by half phrase has killed so many zebras. @raf_ideas #Afflicted
BAN ALL MEDICAL APHORISMS and train doctors how to think probabilistically. "Rare" events are really fucking common given enough time/rolls of the dice. #Afflicted
Oh God. He just said statistically. #Afflicted
"You can be deluded that you are sick. You can believe you're sick when in fact you're not sick." And there you go, folks. The central thesis of #Afflicted (foreshadowed in the not so subtle score) has been made explicit. Ep 4, 00:01:23.
And with this, I would bet everything I have that at least one person will divorce, one person will be estranged from their parents, and at least one person will die in despair who would not have had #Afflicted never been created.
I also object to calling everyone's disease "afflications." They even had the subjects do this, as they though they were all suffering stigmata or a curse from the gods (although granted, it can sometimes feel like that). #Afflicted
It's othering and puts all of these conditions into the realm of the unreal (which is frankly the theme of the whole thing) #Afflicted
So, personally I don't put much stock into the toxin theory of reaction to environmental triggers (it happens and then can be relieved much too quickly). #Afflicted
You can have toxic mold in your body but the reaction to mold in the environment isn't necessarily toxins runneth over, but rather a heightened danger reaction #Afflicted
I personally think it's all mast cell activation disorder (I know others might disagree). Long before the viral infection that triggered my ME, I lived for several weeks in an apartment in Beijing with really, really bad black mold #Afflicted
I had no idea how dangerous it could be. I could smell it faintly but just thought it was "musty." #Afflicted
One day, I was laying in bed and was starting to fall asleep in the middle of the day when I had this sense that if I didn't leave my room immediately, I would die. #Afflicted
Semi-conscious, I walked about ten steps then passed out on the kitchen floor. I was out for anywhere from tens of minutes to a couple of hours. When I woke up, a stream of pitch black snot was dripping from nose. #Afflicted
I moved out that night and a few months later, headed to Boston to start grad school at Harvard. My health was totally normal for the next three years – until the viral infection – but I would notice that I could smell mold in bathrooms and old houses #Afflicted
I figured, I guess my body encountered something that was really dangerous and so now has adapted by being on high alert. This went away within a few months. #Afflicted
I say all this only to convey that while I have no idea how all the piece fit together, it makes complete sense that I was predisposed to become hypersensitive to mold. I AM BEKAH. @julierehmeyer is Bekah. Many thousands of us are. #Afflicted
Now, my mold sensitivity is more of a neurological allergy. I don't have a better word for it. What I do know is that we have mast cells in our nose/sinuses, brain and gut, all part of a mucosal + brain immune system that is constantly communicating. #Afflicted
And for reasons I can't explain, mold, diesel fuel, spinach and strawberries all cause nearly *identical* neurological symptoms + a histamine flushing reaction. #Afflicted
And so I'm sitting here watching this show shit on people who are suffering to the extreme when I am absolutely certain that if we wanted to, if we just #believedthem, we could do the science to measure and actually explain why we are having these reactions #Afflicted
We don't shame children for being dangerously allergic to invisible peanut dust. We don't shame people who become seriously ill from eating something as innocuous as bread. #Afflicted
We never laughed at physicians who wanted to wash their hands of invisible animals before surgery. (Oh wait...) #Afflicted
Anyway, I'm not chemically sensitive (thank God) in the sense that they don't provoke symptoms, but I do find the smells of certain chemicals annoying (they smell way stronger than they actually are), but I am super sensitive to diesel. #Afflicted
These are the banal facts of my life and they have completely rational explanations in the basic biology of our immune and nervous systems. #Afflicted
It's maddening to see people who have what I have (or conditions similar to it) held out as curiosities by totally irresponsible filmmaking #Afflicted
It's emotional to see Harvard campus. #Afflicted
I love Bekah and Jesse. Omar and I have lived apart for years because of my mold sensitivity. We still do. We feel you. #Afflicted
Also, if Bekah has CVID (common variable immune deficiency) that is something that comes up on a very clear test. Why did the filmmakers just skip over that? #Afflicted
Heartbroken to hear about Bekah's struggle with psychiatric illness in her teens and twenties. With a "psychatric" dx, it's 100X harder to get appropriate diagnosis and treatment of "physical" illness. #Afflicted
Bekah had a positive Western Blot test for #Lyme but we hear zero explanation from an expert about what this means scientifically, clinically, and Bekah is just left to mention it in passing. #Afflicted.
OK, and now we get to the part where Pilar refuses to take antidepressants. I've seen a lot of people have taken issue with this and I really don't get it. #Afflicted
I remember when I had no diagnosis, my primary care doctor offered me antidepressants. I asked him, "Why? I have none of the symptoms of depression." #Afflicted
We circled around it for a bit and then I told him that I was open to taking them but needed an explanation as to why he thought they were indicated in my (undiagnosed) condition and through what mechanism he thought they might work, given that I was not depressed. #Afflicted
Doctor: 👀  #Afflicted
So Pilar had a NATURAL GAS LEAK in her apartment for TWO YEARS #Afflicted
And Pilar has Mast Cell Activation Syndrome!! #Afflicted
Oh look! There is Linda Tannenbaum. Who is she? What does she do? I guess we’ll never know #Afflicted
And..Dr. Friedman is back! "If you see somebody has a chronic illness...and if actual symptoms seem to only appear in certain contexts, let’s say, when it benefits them, it does make you wonder what is the role of the symptom.” #Afflicted
I think no matter what, #Afflicted lacks explanation. It focuses a lot on treatments and so really begs for (requires) at least *some science,* which is glaringly absent.
But if they *just* cut Dr. Friedman's constant commentary (which is seemingly, by way of edit, about patients he has never met) #Afflicted would be 70% better!
Now we get to the "friend" who says of Pilar and Jeff, "Dude, I would have left that woman a long time ago!" #Afflicted
OK sleep! More tomorrow 😇
Back :)
Oh staged conversation, fake tension in the car ride to the doctor, amirite? @attunedtherapy. It’s fine, just a little reality TV. #afflicted
(I assume this because you guys seem to be having a conversation about details you probably would have already discussed off camera.)
Jill has a positive ANA, low Vitamin D, and low thyroid hormone. Occurs to me that watching this show, you’d never know the difference between a standard, Quest lab and an unvalidated alt lab unless you had an MD or were one of us who gets blood drawn on the regular. #Afflicted
I think it’s really irresponsible to have on the one hand Friedman saying, essentially, you have to entertain the hypotheses these people all have emotional problems and on the other results like these and Bekah’s Western Blot + CVID. #Afflicted
And going back to Star and her 12 diagnoses, there are some diseases - like Hashimoto’s thyroiditis - that aren’t diagnosed clinically. Hashi’s is reflected in thyroid hormone and autoantibody tests. Same with celiac disease. (And autoimmune diseases often go together) #Afflicted
It’s all starting to run together, a soup of medical mumbo jumbo, where any lay person watching would have a very hard time separating what is completely mainstream, what is experimental but still evidence-based, and what is a total leap of faith or flight of fancy #Afflicted
Jeff’s dad, “I have no empathy for what you are going through at all and I don’t have pity for your wife.” #Afflicted
Jeff: “Would you do this to Mom?” Jeff’s dad: “Your mom would not whine, OK?” #Afflicted
Oh God. Here it comes. Pilar says the lines that have made her the most hated character in #Afflicted.
“I feel like I’m taking advantage of him. But I know because of his love for me, he wants to continue to help me. #Afflicted
”Maybe Jeff feels like he can keep helping me, that somehow he can making this relationship happen, but he can’t force me to love him back. I don’t see him as a husband anymore.” #Afflicted
Maybe she’s a sociopath, maybe their relationship is falling a part for totally valid and more complex reasons than the show conveys. We can never know. #Afflicted
And we can also never know what she really said in context. #Afflicted
But what we do know is the rage you feel at Pilar at the end of episode 5 is the direct setup for the opening lines of episode 6 #Afflicted
In which doctors and family members wonder whether these patients’ “Afflictions” are all on their heads. #Affliction
A narratively satisfying turn after episode 5, aka “patients bleed their poor loved ones dry.” #Affliction
Pilar is talking to an energy healer by phone at @ $6.75/minute. She has a “code” (mantra) “I want to be healthy.” #Afflicted
Ugh. Jill’s friend talking about how one day, all of his clothing set Jill off, another day it didn’t “and it was virtusllybthe same outfit as gas as I am concerned.” #Afflicted
Peoples’ sensitivity can vary over time and sometimes day to day, depending on their overall level of health, as can what is actually on your clothes. #Afflicted
Every day, my husband goes out with clothes I will definitely not react to and comes home with clothes I will certainly react to. Same clothes! #Afflicted🤦🏽‍♀️
Fabric is a highly porous, textured surface that microscopic particles will readily cling to. You wash them, they wash out. You go about your day, you gather new ones. #Afflicted
Friend: “When Jill got sick, there was a crapload of stuff going on in Jill’s life. She was breaking up with her wife. That alone is enough to drive anyone insane.” #Afflicted
So according to Jill’s friend, whom the show has clearly invited to speculate, the cause of Jill’s mold sensitivity and autoimmune disease is a life stressor pretty much every human will face. #Afflicted
Pilar’s doctor: “What your reality in your mind is your reality in our physical world. The mind is where it starts. It’s very, very powerful.” #Afflicted
“There is a huge connection between mind and body. This is what placebo is. And I think a lot of doctors fail to activate placebo in their patients.” #Afflicted
Pilar’s doctor basically saying her condition is psychosomatic and breaking her self-imposed bubble (to cope with MCS) is key to her recovery. #Afflicted
I am still amazed at how we aren’t seeing any of these patients at their worst. I know what it looks like when we are symptomatic. Where is that footage? #Afflicted
It really does feel like the first half of the series and the second had two different director/editor teams. The later half has a lot of reality TV tropes (in particular, really dramatic, disconnected reaction shots) that the first half does not. 🤔 #Afflicted
“Faith is a big part of healing,” says doctor #Afflicted
Oh 👋 again @NotTheWhiskey #Afflicted
CARD: “Dr. Gordon told Jamison that Myalgic Encephalomyelitis May not be the cause of his symptoms.” #Afflicted
NO, NO, NO. That is NOT what Dr. Gordon said and if any other #mecfs doctor has agreed to appear on camera, they would have explained why Jamison meets every criteria #Afflicted
So re: the Well episode (Chapter 7), it's really nice to be able to spend more time with the subjects again without the constant doubting/question-raising commentary. #Afflicted
I do have mixed feelings about the Well episode, though. This is the requisite ending for any story about illness/disability that doesn't end in death: "We gotta wrap it all up and give people hope." #Afflicted
I worked very hard not to do that in @unrestfilm. For so many of us, life just goes on, sometimes better, sometimes worse. #Afflicted
Really happy about Jake's ending, though!!! #Afflicted
"There are plenty of people who have physical symptoms that are being generated by their brain...if you perceive pain, but you have no obvious physical source for pain, you still experience pain." – Friedman #Afflicted
"We have to open our minds to....that, "We don't know what's going on, but these people need help." #Afflicted
And that's THE END #Afflicted

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More from @jenbrea

Sep 21, 2018
I’m starting a new hashtag, #Nightingales, specifically to connect people with #EDS #hEDS #MECFS #POTS #MCAS #FIBRO. However, all are welcome!
Why these diagnoses? The thesis is that they share either an underlying biological relationship (genetic, environmental, pathophysiological or otherwise) OR a nosological one: they are actually different but often confused for each other. #Nightingales
It’s my hope that by communicating across community, we can all become better informed advocates and allies; help each other find more accurate diagnosis and effective treatment; and discuss science + clinical approaches from an interdisciplinary perspective. #Nightingales
Read 12 tweets
Sep 16, 2018
If you were going to frame an umbrella term to comprise related diseases like ME, EDS, fibro, MCAS, POTS, endo (and others), what would you call it?
Note: I’m not talking about a scientific umbrella. We don’t yet know enough to say that there’s an underlying biological relationship and if there is, between which diagnoses, and for what reasons.
We just know that these conditions tend to flock together, whether for scientific reasons or social ones (e.g., diagnostic uncertainty).
Read 12 tweets
Sep 12, 2018
I've had remarkable control or at least perspective on every single emotion I've experienced these last six years. I realize now it wasn't courage or astonishing emotional maturity. It was self-protecting resignation. It felt necessary in the face of neglect, disbelief, abuse.
It’s helped me achieve more than I ever imagined under some extraordinarily difficult circumstances. But survival strategies developed under duress usually, eventually outlive their usefulness.
I've started to experience what medicine can look like at its best. I’ve met doctors who think like scientists, but operate like detectives; who are that rare mix of creative, curious, skeptical, rigorous. It's allowed me to open myself up to hope and but with it, utter terror.
Read 17 tweets
Sep 2, 2018
.@SarahbaxterSTM's argues that #fibromyalgia, #mecfs, #lupus, #depression, self-harming and #anorexia are caused by female ambition and fragility.

What's c. 1880 is new again.…
This is just so silly. In the 19th century, there was a panic in the medical profession (and among social commentators) about women becoming ill with neurological and "nervous" conditions because they were overworking their brains/nerves, which were naturally weaker than men's.
This “fact” was used to bolster the argument in favor of stopping women's formal education after age 16 and most certainly not letting them enroll in university.
Read 26 tweets
Aug 22, 2018
Guys, I just learned that *A LOT* of people are ableist. 😲
Institutionalized ableism? Check. Welfare spending, scientific research, the medical system, public access, hiring & employment, consumer design, the media. We don't even do the minimum rational, in everyone's self-interest stuff yet.
But then #Afflicted happened and I LOOKED INTO THE SOULS OF MEN.
Read 13 tweets
Jun 26, 2018
I know people have been asking how I'm feeling. I don't have much to say at this point other than thank you so much for your support over these last many weeks. Overall, I'm weak and it's going to take time.
The cancer treatment at UCLA was world class. I felt like I had walked through a portal into the future. They next day, when no one could understand why I couldn't sit up, much less walk, I was snapped back to the 19th century.
These two experiences – one the result of 60 or 70 years of cancer research, training and practice, the other of decades of total neglect of ME – coexist in the same moment in history. I've never experienced the inequality of what we must live everyday in such a direct way.
Read 4 tweets

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