Thread by @jenbrea

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 (europepmc.org/abstract/med/2…) 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

👋@attunedtherapy #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