Netflix "Afflicted" - ME included

[Luther Blissett]

I don't know where that attitude comes from. It seems to have always been there and the medical profession is just incapable of self-reflection about other people's past mistakes. It's not even their personal mistakes, I don't understand the stubbornness in refusing to address such glaring failures. The costs are staggering and the outcome disastrous for everyone.

It's the Just World bias/fallacy. People who strongly believe that actions are always rewarded appropriately, that good and bad people get what they deserve because the world is a just place. When presented with good people who do not get what they deserve, Just World believers start to invent justifications why 'good' people really did deserve the bad outcome. I would say that being a medical professional biases people towards believing in a just world. Their hard word and dedication has lead them to being socially rewarded in a way they feel is appropriate. They studied hard and were rewarded. They do not factor in the things like luck that also led to the reward, like the social economic status of the family they were born into, and the resultant options available to them.

Oberserver's reaction to the 'Innocent Victim": Compassion or Rejection? (Lerner 1968)
http://web.mit.edu/curhan/www/docs/...ersonality_Social_Psychology_203_(Lerner).pdf

 

[dannybex]

Basically every single claim made in that comment is the exact opposite of our reality and that of the tens of millions of others living with poorly understood chronic immune diseases. It describes the complete opposite of my personal experience, to a disturbingly accurate degree. It's a perfect description of exactly what does not happen. Secondary gains? WHAT FUCKING SECONDARY GAINS?! WHERE?

I hope that someone with a Reddit account will take the time to reply to this idiot. All they need to do is post a link to an article about Whitney Dafoe, and ask him if he thinks Whitney's faking it for secondary gains.

 

[dreampop]

I can assure you that Afflicted is not changing the 'meddit' opinion, just reinforcing it, since that has been any and every thread I've read on ME/CFS on reddit since I started using the site a long time ago.

About Reddit in general, I wouldn't get carried away that equals absolute voice of a community. It's a step above facebook. Yes, there are a lot of doctors that straight up think anyone whose struggled with health problems and has gone to multiple places to figure that out is "doctor shopping". God forbid anyone get misdiagnosed. But, that's Reddit. Most threads I go on there is some wildly upvoted beyond insane comment. Think of a subject and then have the 19 year old male circle jerk opinion on it that you shout out a party and I'll show yuo a comment with a ton of upvotes. Think of the most cringeworthy jokeyou could hear irl and it nears the top. Visit r/movies if you want to vomit for about an hour and half and give up on humanity. And even in smaller communities that's true. That's about as neutral a subject as you can get. I've never met anybody that thinks like or speaks like most reddit comments.

 

[WillowJ]

To me, the idea that people can respond badly to certain substances in ways that we do not understand seems entirely unsurprising. But...

Thanks for explaining

 

[Inara]

No thanks, I see enough of these patients in real life.

Yes, @rvallee, I came across a comparable comment by a female doctor who said you have to find those who are really sick and send away those who have a "psychiatric illness". That says it all.

I know that many doctors exactly thought about me what that person on reddit wrote you cited.

The problem they don't see: Always the same "Piss off" tests are performed. Tests that can't say anything - like an EMG in only one muscle or only very rudimentary tests of liquor (like a "small blood picture"). But even if there some values are out of range that's not being looked at. Connections are not looked at. In fact, doctors who say such things are doctors who don't want to or can't think. They only see the obvious, and if you come with a good small blood picture, that's it.

I don't see how we can change it, because what we face is prejudice, discrimination and views that are completely founded on subjective (dis-)liking. Because as you say:

Basically every single claim made in that comment is the exact opposite of our reality and that of the tens of millions of others living with poorly understood chronic immune diseases.

We do balk at a psychiatric referral, although that is perfectly natural since it doesn't have any more answers than alternative medicine does.

Yes, after I made bad experiences. By the way, I find it natural and healthy to stay clear from things which aren't good for me. So I expect that a great part of people with ME or other chronic, degraded diseases stay clear off psychiatry.

They look at alternative medicine as an indictment on desperate idiot patients,

Maybe doctors and other people do, but the health industry wants the sick person that pays for alternative treatment (and that still can work). Interesting situation!

I still think the aim is to dispose of sick people who can't work, who want benefits and whose disease won't be cured in due time.

 

[Inara]

They studied hard and were rewarded. They do not factor in the things like luck that also led to the reward, like the social economic status of the family they were born into, and the resultant options available to them

Yes! I had a very good conversation with someone who exactly thought this. The difference was, it was open. I wanted to show which part luck plays, and that having a good social status at the beginning - like that person - is luck, but a game changer.

This view you describe is very common, and it makes things so very difficult and nasty. I think it has its origin in Calvin's predestination (today it's the Baptists' belief): If you are chosen by God you are successful and healthy, and therefore "good".

 

[James Morris-Lent]

Regarding luck, we don't tend to think of it this way, but really people are endowed with different capacities for 'hard work' (usually something seen as opposed to luck, or talent). That's not to say that people can't try more or less hard and that this isn't very important, but we just don't all have the same stamina (I'm talking amongst healthy people). There was an interesting thread earlier about people's pre-disease 'motor' which showed quite a variety. This is all over-simplified, but hard work is a talent.

Also, it should go without saying that an individual's intelligence plays a massive part in his or her life success while also being imparted totally by lottery.
___

Ignore reddit! Toxic, do not touch. I can't imagine serious medical professionals (or other types of human) going anywhere near that. Also, actually a lot of what was quoted is quite true on its face. The interpretation is off the rails, of course.

 

[Sarah]

Most are highly enabled by their families. Most get a great deal of secondary gain.

Secondary gains?

If a patient claims they are believed and supported by their their family it can be taken they are enabled and the recipient of secondary gains. If they claim not to be believed and supported by their family it can be taken as evidence that they are not to be believed since the people reasonably expected to know them best do not believe them.

Just World believers start to invent justifications why 'good' people really did deserve the bad outcome. I would say that being a medical professional biases people towards believing in a just world. Their hard word and dedication has lead them to being socially rewarded in a way they feel is appropriate. They studied hard and were rewarded. They do not factor in the things like luck that also led to the reward, like the social economic status of the family they were born into, and the resultant options available to them.

Agreed, and with @James Morris-Lent re intellect and stamina. I think it's also a profession that is subject to entry for the 'calling' reason for a significant number of those taking the medical career route. It seems a small jump to suggest doctors and HCPs in the round may have greater proneness to just-world fallacy if they not only believe they have worked hard and been proportionately rewarded, but that their decision to pursue medicine was and their day to day work is morally good per se.

 

[Invisible Woman]

.

It seems a small jump to suggest doctors and HCPs in the round may have greater proneness to just-world fallacy if they not only believe they have worked hard and been proportionately rewarded, but that their decision to pursue medicine was and their day to day work is morally good per se.

Then add to that the years of being an authority over these patients, in a system where, even if you do get it wrong, the patient will rarely complain either because the complaint process is too difficult, or because the patient is scared of the repercussions.

 

[ukxmrv]

Since Afflicted came out, I’ve been debating on whether or not it should be ignored or if we should kick advocacy into full gear. But I believe Afflicted has presented us with an unfortunate but unique opportunity. This may be the moment we have been waiting for to get ME the recognition it finally deserves.

Inaction may result in people with ME being disowned from their families, or losing friends/relationships and worst case scenario, someone may take their life. We’ve waited for an opportunity to get ME into the headlines and although this isn’t exactly how we had all dreamed on achieving that goal, we can develop a campaign to counter this injustice/misrepresentation that press outlets find interesting.

One opportunity that stands out to me the most is our ability to unite with our allies, specifically the Lyme community. I’ve been racking my brain for years trying to come up with some way our communities could come together and I think this is it! Its already happening, people with ME, Lyme, MCS and mold sensitivity are connecting because they are equally as outraged with our portrayal in the docuseries. I think we need to be creative, like we were with #MillionsMissing, and change the direction that Afflicted tried to take our community. If someone has an idea for a strategy, perhaps contact MEAction?

Although this might not be the best approach for everyone, we must remember that there are different ways to handle this situation and we have to engage in the type of advocacy that meets our needs.

What do you have in mind? I genuinely can't see any real advantage to uniting with other badly treated patients.

We've had a lot of this bad and damaging publicity (in many different ways over decades) and I genuinely can't see a way of using to our advantage. Hope someone can.

 

[Esther12]

One opportunity that stands out to me the most is our ability to unite with our allies, specifically the Lyme community. I’ve been racking my brain for years trying to come up with some way our communities could come together and I think this is it! Its already happening, people with ME, Lyme, MCS and mold sensitivity are connecting because they are equally as outraged with our portrayal in the docuseries. I think we need to be creative, like we were with #MillionsMissing, and change the direction that Afflicted tried to take our community. If someone has an idea for a strategy, perhaps contact MEAction?

I think that this would be a bad idea.

Since PACE came out and there was such an effective campaign to present any patients challenging Wessely's views as unreasonable and anti-science we've made progress by cautiously pushing for more rigorous research, more critical thinking and less of a tolerance for quackery. If we can now be portrayed as just being another sub-group amongst those pushing for greater use of things like unvalidated Lyme testing (which still seems to be a key part of the alternative/chronic 'lyme community'), then we will make it much easier for anyone who wants to try to dismiss our concerns.

I think that the most important thing for any campaigning we do is for us to be right, and to have strong arguments which you can use to pick apart your opponents. We already face a lot of prejudice, and I suspect that this is likely to continue with varying degrees until we have a solid understanding of the cause of our ill health. Anything that we do or say which is unreasonable will play into those prejudices, in a way that would be much less likely to affect (random example) someone with MS making unreasonable claims or pursuing quack treatments.

It sounds like Afflicated, and the response to it, might be useful for showing people the effect that embracing quackery can have on the way that others in society view them. It's not just a poor use of time and money, but also invites scorn.

 

[Guest 102]

I think that this would be a bad idea.

Since PACE came out and there was such an effective campaign to present any patients challenging Wessely's views as unreasonable and anti-science we've made progress by cautiously pushing for more rigorous research, more critical thinking and less of a tolerance for quackery. If we can now be portrayed as just being another sub-group amongst those pushing for greater use of things like unvalidated Lyme testing (which still seems to be a key part of the alternative/chronic 'lyme community'), then we will make it much easier for anyone who wants to try to dismiss our concerns.

I think that the most important thing for any campaigning we do is for us to be right, and to have strong arguments which you can use to pick apart your opponents. We already face a lot of prejudice, and I suspect that this is likely to continue with varying degrees until we have a solid understanding of the cause of our ill health. Anything that we do or say which is unreasonable will play into those prejudices, in a way that would be much less likely to affect (random example) someone with MS making unreasonable claims or pursuing quack treatments.

It sounds like Afflicated, and the response to it, might be useful for showing people the effect that embracing quackery can have on the way that others in society view them. It's not just a poor use of time and money, but also invites scorn.

Agree, a very bad idea.

 

[Robert 1973]

It's the Just World bias/fallacy. People who strongly believe that actions are always rewarded appropriately, that good and bad people get what they deserve because the world is a just place.

Thanks for this post, Luther. I had thought about the idea but I hadn’t come accross the term before.

I would say that being a medical professional biases people towards believing in a just world. Their hard word and dedication has lead them to being socially rewarded in a way they feel is appropriate. They studied hard and were rewarded.

Yes, this is an example of success or survivorship bias. One often hears successful sportspeople telling the world how their success in winning some prestigious competition just goes to show that it you believe in something and work hard enough you can achieve anything – ignoring the fact that if everyone in the world works to their maximum potential and believes that they are going to be world champion, at least 7 billion people are going to be disappointed. But it is the winners voices that are heard.

From Wikipedia article on Just-World hypothesis:

Positive mental health effects
Though much of the initial work on belief in a just world focused on its negative social effects, other research suggests that belief in a just world is good, and even necessary, for mental health.[46] Belief in a just world is associated with greater life satisfaction and well-being and less depressive affect.[35][47] Researchers are actively exploring the reasons why the belief in a just world might have this relationship to mental health; it has been suggested that such beliefs could be a personal resource or coping strategy that buffers stress associated with daily life and with traumatic events.[48] This hypothesis suggests that belief in a just world can be understood as a positive illusion.[49]

Oh dear! Maybe they should do a study to determine whether a belief that one is not living in extreme poverty is good for mental wellbeing.

Interesting to note that at least some psychological researchers believe that false or irrational beliefs may be necessary for mental health. Is this why Sharpe was so keen to emphasise that PACE referred to unhelpful beliefs rather than false ones? Truth does not seem be particularly important to these people.

[Edit – typos]

 

[Pechius]

"This hypothesis suggests that belief in a just world can be understood as a positive illusion.[49]"

At least the article mentions that it's an illusion. What if we take a leap and imagine that all people stopped believing in this illusion? How would that affect people with chronic illness? What effect would it have on the ones who previously believed in it? Wouldn't everyone eventually feel more connected and more like living in a just world without a need for illusions?

There are some who have an illusion that their happiness depends only on their own wealth, health and well-being. That's nonsense. If you're a millionaire, but your mansion is surrounded by slums, how happy will you be? I'd say not happy at all, unless you're a sociopath, of course.

Healthy, successful people can live in their bubble and shield themselves from all that they call 'negativity' without much problem. A tv programme talks about ME? Just change the channel. A friend got sick? Label them hysterical and abandon. You're only doing it for their own good anyway, right? 'Tough love'(borrowed from Mayo). You wrote a 'negative' tweet to Sharpe? Don't worry, he'll block you.

But it's also funny, because it eventually catches up to you, wether you like it or not, and it's interesting to see how surprised some people are when something like that happens and the illusion is over.

Is it better to believe in a just world or to actually live in one?

 

[alex3619]

It sounds like Afflicated, and the response to it, might be useful for showing people the effect that embracing quackery can have on the way that others in society view them. It's not just a poor use of time and money, but also invites scorn.

This is my main advocacy concern with promoting unproven treatments. I have no issues with people experimenting, provided they are aware of the risks, but it should not be promoted as an answer unless there is good science.

Even our scientists get attacked. They know the science. Yet one mis-statement and they create an opportunity for a political and rhetorical argument to be used against them. Not that this matters much, prejudicial arguments don't require facts.

I really like the point that this series shows how a presentation of extreme views creates even more bias in the way people think about misunderstood illnesses. This is how hate speech sometimes works too ... pick the most extreme examples, then cherry pick what they say, and hey presto, an instant argument against them.

The science is on our side. Their side has .... (crickets chirping).

 

[alex3619]

Is it better to believe in a just world or to actually live in one?

Justice occurs because millions work hard to make it happen. Its not the natural state of the world.

 

[Guest 102]

What do you have in mind? I genuinely can't see any real advantage to uniting with other badly treated patients.

We've had a lot of this bad and damaging publicity (in many different ways over decades) and I genuinely can't see a way of using to our advantage. Hope someone can.

Moreover, the political history of ME is unique to ME. There may be overlaps now with other ‘emerging’ poorly understood conditions as far as the contempt shown by medical profession goes, but ME is not same as chronic Lyme, it is not same as mould sensitivity and it is not same as MCS. Though of course sensitivities can be part of ME profile, but ME is a discrete illness that we have been uniquely and diligently fighting for for decades. I think it would dilute/undermine our advocacy to join forces in the way suggested. That does not mean we don’t have huge empathy for the struggle these other patients face.

 

[Dolphin]

I’m not sure doctors will be more likely to be of the Just World mindset with regard to health than an average people. They will have seen a lot of suffering and death in all sorts of people including children who you’d be less likely to believe generally were the cause of their health problems (with some exceptions like some accidents and severe obesity).

I’d guess there are a lot of people in society who think most illness is down to lifestyle factors.

 

[JaimeS]

That could have been a ploy to draw participants out and keep
them onboard until the end of the project.

It seems that they did their best to recruit under-directors who were empathetic and kind in order to set the subjects at ease. It's a lot easier to get seemingly authentic and relaxed portrayals of reality if you send the genuinely kind people out ahead of you.

 

[JaimeS]

Do you think it could be worth warning him that it seems he is still a bit entangled in quackery?

It seems like you're saying that every vitamin or supplement is useless quackery. I think I must be misunderstanding you!