Netflix "Afflicted" - ME included

Worldwide fame for S4ME! :)

Excellent German article about Afflicted. It's just a short paragraph about how Afflicted failed and then the article concentrates on ME as one of the diseases that were misrepresented. Prof. Montoya, Prof. Davis, Linda Tannenbaum and Jamison Hill are cited. Science for ME is mentioned (because of the Q&A with Montoya) and is also listed as a source at the bottom. One of the best articles about ME in German I know. Maybe the tide is really turning.

http://www.general-anzeiger-bonn.de/news/kultur-und-medien/Netflix-Doku-über-Krankheiten-erntet-Kritik-article3960866.html

Automatic generated English translation: https://translate.google.de/translate?hl=de?sl=auto&tl=en&u=http://www.general-anzeiger-bonn.de/news/kultur-und-medien/Netflix-Doku-%C3%BCber-Krankheiten-erntet-Kritik-article3960866.html
 
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Twitter thread written by a pwME in Sweden:



Hemmeli__ on Twitter said:
So. The other day my caretaker said that she watched a documentary on Netflix about ME. I thought she was taking about Unrest, but seconds later understood she was talking about Afflicted. I told her I was so upset after watching it that I unsubscribed from Netflix immediately.

She said that she really liked it and that it was obvious that they all had mental problems. I told her my thoughts about it and we proceeded from her washing my hair to her helping me get dressed. Minutes later she handed me the socks and told me to try and put them on myself.

“Just try it, you can do it!” Well, I really can’t put my socks on myself which I now had to prove to her, before her helping me. And I wonder if it’s a coincidence that she asked this for the first time after helping me get dressed for two years, right after watching Afflicted?

I can’t tell you how humiliating it is hearing “Come on, you can do it!” When you really can’t do it and you thought that person knew it for years. #Afflicted #Unrest #PwME
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Really shameful of Netflix to have kept this tripe. When the subjects of a show all testify that what they said has been misrepresented, you know it's not serious work. I don't know if it's still categorized as a documentary but at best it's a reality show for prejudice porn.

I don't miss the subscription. Except for Bojack. But it's an easy protest when there is so much stuff on Youtube.
 
Science-Based Medicine reviews afflicted, it's a bit of a mixed bag and makes no mention of Jamison or me/cfs

Afflicted and the Tragedy of Fake Illnesses
Afflicted is a documentary following the lives and treatments of people “diagnosed” with illnesses not recognized by science. Conversely, it could also be seen as a documentary illustrating the risks and harms of alternative medicine.
https://sciencebasedmedicine.org/afflicted-and-the-tragedy-of-fake-illnesses/


of course, while the causes of their symptoms may not be what they believe it to be, that does not mean their suffering and symptoms are not real. It just means we have to continue looking for the real cause rather than stopping at the quick, easy, and wrong answer sold by glib charlatans.
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They have been led to believe that the “diseases” that they have are real, despite evidence to the contrary, by the internet and quacks. That isn’t to say the symptoms they experience aren’t real, they are. However, it is very highly unlikely, if not scientifically impossible that their symptoms are caused by what they believe. The people in the series have been pushed to fear the world that they live in: the air that they breathe, the food they eat, the water they drink, and the technology that powers everyday life in the 21st century.
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It’s unfortunate that mental illness and mental health treatment is stigmatized to the point where it’s considered offensive to recommend mental health treatment to someone who likely has a psychosomatic illness. If people who believe they have these illnesses don’t receive the compassionate, evidence-based care they need, they will be taken advantage of.
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:banghead:
 
wdb said:
Science-Based Medicine reviews afflicted, it's a bit of a mixed bag and makes no mention of Jamison or me/cfs

Afflicted and the Tragedy of Fake Illnesses
Afflicted is a documentary following the lives and treatments of people “diagnosed” with illnesses not recognized by science. Conversely, it could also be seen as a documentary illustrating the risks and harms of alternative medicine.
https://sciencebasedmedicine.org/afflicted-and-the-tragedy-of-fake-illnesses/






:banghead:
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It really says a lot about the state of medicine that participants in the series took pains to state that their representation was heavily edited and misrepresented everything and this objection, which should normally have sunk the series in disgrace, is thoroughly ignored.

Participants told you that they were edited to paint a narrative, that their words were twisted, and still the words of professionals involved in the series, despite having no relevant knowledge of the patients or the conditions, are taken at face value over serious warnings that the series is a misleading mess.

Not even gonna bother with the fact that ME is a denied disease with a huge body of evidence, not a fake illness, and MCS seems more and more likely to actually be MCAS in most cases, so not a fake illness either.

Science-based medicine, I guess the name is ironic. Magical thinking is just so damn rampant in medicine, it's demoralizing.
 
wdb said:
Science-Based Medicine reviews afflicted
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Sciencebasedmedicine said:
Their conditions are entirely fake and research has shown that people claiming to have “supposed” sensitivities can’t detect the things they’re supposedly sensitive to any better than people who don’t.
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In the case of MCS the claim by patients is that they suffer symptoms as a result of exposure to certain chemicals not necessarily that they are better at detection than healthy controls.
Sciencebasedmedicine said:
It just means we have to continue looking for the real cause rather than stopping at the quick, easy, and wrong answer sold by glib charlatans.
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You mean like the easy answer that the cause is psychological or psychosomatic?
Sciencebasedmedicine said:
We’ve already discussed that there is no evidence that electromagnetic radiation effects health in any way.
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So you're happy to be exposed to UVC or X-rays?
Sciencebasedmedicine said:
It’s unfortunate that mental illness and mental health treatment is stigmatized to the point where it’s considered offensive to recommend mental health treatment to someone who likely has a psychosomatic illness.
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The old stigma card that gets played so often. Did you stop to think that may be patients are offended because they have a physical illness and that they know from first hand experience that patients will be treated in a way that is detrimental to their health by doctors and society in general if they are misdiagnosed as having a mental health problem?
 
Hi guys, had been ill for the last 2 weeks with the darn flu and watched a lot of films on Netflix, couldn't sleep because of severe coughing. I watched Afflicted and by the second episode, I already knew this was not a serious documentary. The participants were treated like shite and the film was a disservice for chronic illness awareness. I wish the guys could raise money to produce an answer to this outrageous film. It could be called 'Inflicted'.
 
Defamation Lawsuit Against Netflix Over ‘Afflicted’ Docuseries Allowed to Proceed

A state appellate court has turned down Netflix’s bid to dismiss a lawsuit brought by subjects of docuseries Afflicted who say they were defamed when the show misrepresented their chronic illnesses.​

In a unanimous decision from the Second Appellate District, the panel ruled that the consent releases the subjects signed aren’t enforceable because they were lied to and pressured to waive their rights not to be defamed. It found that plaintiffs can pursue claims over misrepresentations in the documentary that “were reasonably susceptible to an interpretation that defendants were portraying [their] illnesses, and accompanying physical symptoms, as not the result of any underlying, diagnosable medical condition, but rather as either the product of [their] imaginations or some mental disorder.”​

Click the link in the title for the whole article.
 
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Doubtful it would be that big of a win, but I hope the producers are sued into bankruptcy, so they can never pull off something like this again. They knew what they were doing, they wanted to mock and bully sick people while promising they wouldn't. Promising fair treatment while explicitly meaning to be mocking and disrespectful warrants it.

Speaking of which, is it still on Netflix?
 
Nilsson, Annika (Washington U., St. Louis) "Grassroots Science: Patient Research Practices in Online Complex Chronic Illness Communities"


ANNIKA NILSSON, then a graduate student at Washington University, St. Louis, Missouri, received a grant in October 2021 to aid research on “Grassroots Science: Patient Research Practices in Online Complex Chronic Illness Communities,” supervised by Dr. Talia Dan-Cohen. This project sought to understand how people living with complex, medically underdetermined chronic illnesses advocate for themselves and produce knowledge about their conditions through informal research and self-experimentation mediated by online forums and support groups. While public discourse often describes these activities as a potentially dangerous rejection of medical authority, the participants in this research resorted to online research and self-experimentation only after conventional medical care proved ineffective or inaccessible. They understood their departure from conventional medical care as temporary and driven by the urgent need to address their symptoms, rather than as a rejection of the conceptual, scientific underpinnings of medical science. Participants in chronic illness forums used narrative as a tool for both knowledge-making and public-facing advocacy. In patient-centered forums, users collaboratively analyses of narrative accounts of one another’s’ illness experiences in order to identify patterns, in an approach that emphasized how differences between individual bodies, histories, and contexts influence illness trajectories. In public-facing settings, emphasis on promoting audience identification through brevity and broad relatability came at the expense of authenticity, particularly for marginalized participants. Thus, the effort to improve circumstances by seeking to broaden public awareness and empathy may in fact further obscure the structural causes and consequences of complex chronic illnesses.

https://wennergren.org/grantee/annika-tara-nilsson/
 
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