Netflix "Afflicted" - ME included

[Sisyphus]

That is disappointing. I thought the first episode was very promising. Aargh

Why do they always have to go down that road? They start out by saying ‘look how very sick these people are’ and sooner or later always end up at ‘these poor, delusional people, luckily that means it won’t be us some day!’

I’ll probably try another episode or two, but thanks for the warning @Diwi9

Hollywood is not in the reality business. Neither is the news media.

 

[Jonathan Edwards]

There are a subset of patients who did have inflammation in the brain.
But the vast majority of people with chronic fatigue don't.

There may not be sufficient proof of the positive, but I've never seen positive proof of the negative. (Is there? I checked with a neuroscientist and he said there is not.)

I wish doctors understood logic, probability, statistics and causal inference. I wish the public (and TV documentary producers) didn't mistake doctors for scientists.

There is cast iron proof @JenB. I wonder who your neuroscientist is? Is he someone also trained in clinical neurology, histopathology, immunology and with extensive clinical experience of looking after people with encephalitis, as in lupus? (Like me.) Neuroscientists have got used to talking of 'neuroinflammation' in the context of everything from Parkinson's to Alzheimer's. This takes the meaning of inflammation completely away from the original meaning as used in the term encephalitis.

Inflammation, as in encephalitis, is a process where increased dilatation and permeability of blood vessels leads to increase in flux of fluid and cells followed by tissue restructuring. The term actually means the 'flaming' of the redness due to dilatation. You cannot see that in a brain and dilatation is not necessarily the most important factor so clinical encephalitis is really about the manifestations of increased permeability.

Even slight increase in permeability of blood vessels in the brain produces swelling with either impairment of consciousness or abnormal brain function such as severe mood change or loss of sensory or motor capabilities. Lupus encephalitis neatly illustrates all the stages of pathology. Even slight changes with increased water content lead to mood change, drowsiness (not fatigue) and then coma. If there is local change with cellular influx then you get what looks like a stroke.

These changes are easy to pick up clinically. There are also now easy to pick up on MRI. In people with ME they are not there. The guy is on cast iron ground. We know for sure that the majority of people with ME do not have encephalitis. They might have some microglial activation but that is not encephalitis. Negative MRIs are not absence of evidence, they are evidence of absence.

I understand logic, probability, statistics and causal inference very well, Jen. I am also both a doctor and a scientist. I think you need to make sure you are not mistaking absence of evidence that someone knows what they are taking about for evidence of absence!

Moderator's note:
Subsequent discussion of brain inflammation has been moved to a new thread:
Discussion - Does ME involve brain inflammation?

 

[Kalliope]

@JaimeS ' review at #MEAction
Netflix' docuseries "Afflicted" exploits and stigmatises chronic illness

Jen Brea with a long twitter thread on her thoughts and impressions so far on the series

 

[Hoopoe]

Is electrosensitivity a real thing? A quick look at Wikipedia suggests not. Funny enough, Wessely seems to be active in this area as well.

How do sufferers of electrosensitivity describe their symptoms? Are symptoms supposed to immediately flare up in response to electronics, or is the reaction delayed, or does it take a certain dose before symptom appear? I can certainly come up with various scenarios where the tests that supposedly debunk electrosensitivity could be inadequate. A bit like CPET in ME/CFS may be normal until it's repeated.

If electrosensitivity is not real, how and why did patients convince themselves that this is what they suffered from? Is it then just a case of psychosis? Or is it just the human tendency to see patterns and correlations where there are none, perhaps combined with an emotional need to feel in control over unpleasant symptoms.

 

[wdb]

If you want a full transcript it's not too hard to download the subtitles.

 

[Keela Too]

If you want a full transcript it's not too hard to download the subtitles.

@JenB

 

[Esther12]

Is electrosensitivity a real thing? A quick look at Wikipedia suggests not. Funny enough, Wessely seems to be active in this area as well.

Some of the claims around 'electrosensitivity' really don't make sense, and in blinded testing it seems that people's symptoms are unrelated to their reported triggers. I think that there is legitimate reason to be sceptical of some patients' claims, as with anyone else. Just because some doctors can be unreasonable in dismissive ways doesn't mean that patients' views about their health are always right, especially when there are a lot of quacks out there trying to make money from manipulative nonsense.

If someone is prone to migraines and they often get trigged by screens or flickering lights, I can see how that could be confused with a form of electrosensitivity. Who knows? Some people might really just get caught up in nonsense and following rules they've been given in order to feel better. I feel like I behaved in a pretty odd way for years while I was trying to follow a rehabilitation/GET programme - people who are ill and being told that following some ritual will make them better can act like idiots.

PS: I think that the scepticism of Carmen's husband, described in @JaimeS ' review, could well be justified.

 

[Inara]

Is electrosensitivity a real thing?

I don't know.
I just remember when using my old cell phone that my ear got warm and I got a headache. Not bad, but it was reproducible so that I used ear phones. My newer cell doesn't make this.

I also remember the feeling when walking under huge power poles as a girl, the sizzling, the hair and everything in the body; my sisters and I didn't like it. Or my reaction to an MRI of the head (disorientation, dizziness, nausea and headache which all resolved after the scan).

I don't call that "electrosensitivity" - I think every human being is "sensitive" to electromagnetism in a sense. But I think different people can react differently to electromagnetism; and to me, physically, that makes sense. In our bodies, we have currents. Even though these are not strong, I think a human body will have a light electromagnetic field, and electromagnetic fields influence each other.

 

[mango]

imdb is doing something unusual: Arithmetic mean = 2.8 for Afflicted, but they have it at 4.2 on the site as a 'weighted average'. That's weird.

The median vote is one star.

The vote average for film "X" should be Y! Why are you displaying another rating?
IMDb does not use the arithmetic mean when calculating the ratings, although the raw mean and median are shown under the detailed vote breakdown graph on the ratings pages. Instead we use a weighted average scheme. In order to avoid leaving the scheme open to abuse, we do not disclose the exact methods used. You may find more information on Weighted Average Ratings.

This ratings system is applied universally across the database to all movies, without exception, to ensure there is no bias. The system combines a number of well-known and proven statistical methods, including a trimmed mean to reduce extreme influences and, most importantly a complex voter weighting system to make sure that the final rating is representative of the general voting population and not subject to over influence from individuals who are not regular participants in the poll. The system has been developed internally over the 10 years the poll has been in operation and tuned on a regular basis to make sure it remains fair.

The objective of the scheme is to present a more representative rating which is immune from abuse by subsets of individuals who have combined together with the aim of influencing (either up or down) the ratings of specific movies. This includes people involved in the production of a movie and their friends or fans trying to unduly raise the rating of a movie far above that of where the typical IMDb users would rate it.

IMDb takes pride in the unbiased nature of our database. This is why we also display the raw vote totals along with the mean and median votes to provide transparency to our users.

https://help.imdb.com/article/imdb/...r-rating/G3RC8ZNFAGWNTX4L?ref_=helpart_nav_9#

Weighted Average Ratings
IMDb publishes weighted vote averages rather than raw data averages. Various filters are applied to the raw data in order to eliminate and reduce attempts at vote stuffing by people more interested in changing the current rating of a movie than giving their true opinion of it.

The exact methods we use will not be disclosed. This should ensure that the policy remains effective. The result is a more accurate vote average.

https://help.imdb.com/article/imdb/track-movies-tv/weighted-average-ratings/GWT2DSBYVT2F25SK#

 

[Marit @memhj]

I strongly recommend watching the series at least twice. listen closely, see and reflect.

And Stop this campaign. It can not be justified at all.

In #Unrest, the story is controlled in opposition to #Afflicted, who takes all opinions - the good and the bad.

It's not exactly unknown to people with ME, actually too familiar. If you have read patient forums for many years, people must have noted family and relatives, friends' skeptical views and all the hurtful words and body language. I have ... and I'm not unique in this world.

Sore toes do not at all make any commitment to support biomedical research. You should really focus on what's important here, . patients who are left to themselves, missing clinical trials, no FDA proved drugs for ME, some for FM and drugs off-topic did not get highlighted or mention in unrest either....

 

[Inara]

@Marit @memhj, I don't understand you. Would you explain?

If Jamison doesn't feel happy with the end result, that counts, doesn't it? The same holds for those who participated in "Afflicted" and feel treated wrongly.

But maybe you know more, that's why I ask.

 

[Trish]

Sore toes do not at all make any commitment to support biomedical research. You should really focus on what's important here, . patients who are left to themselves, missing clinical trials, no FDA proved drugs for ME, some for FM and drugs off-topic did not get highlighted or mention in unrest either....

I wonder if you understand the point I and others are trying to make about the series.

I have watched the whole series. I saw a lot of very unwell people who had been let down by orthodox medicine which has nothing to offer them and has turned them away. I also saw some of them being misunderstood and disbelieved by their families and friends. I also saw most of them wasting enormous amounts of money on crazy 'therapies'.

So far I think we agree, the series highlights the plight of people with hard to diagnose symptoms and the desperate lengths they go to try to get help.

If that had been presented either straight without commentary, leaving the audience to make up their minds, or with some genuine experts who are researching things like ME, it could have been a good educational series.

But what the director has chosen to do instead is to turn it into a freak show, with horrible jangly music and endlessly repeated statements to camera and voice overs while showing pictures of the patients, by some doctors and psychiatrists baldly proclaiming that all these people, who they had never met, have psychosomatic symptoms.

The take away message was clear - these are a bunch of nutcases who think they are sick but it's all in their heads.

I gather they filmed at an OMF meeting and talked to some of the researchers, but all they showed was a few seconds of Linda Tannenbaum.

I think the participants have been used by the director to convey a message that there are a lot of deluded people who think they are sick, but it's all in their heads.

 

[Joh]

(The first post is about Prof. Montoya)

 

[Esther12]

The more I see about Afflicted and people's response to it, the more I think that it would be best for ME organisations to give it a wide berth. I do not see anything to be gained by tying ME advocacy to it, and a lot to lose. It sounds like a number of the people featured made unreasonable claims about their health, and that they were presented in a way that means many viewers dislike and distrust them. From the sounds of things there were unethical aspects to the production of the series, and I expect that it is going to do some real harm. It could be worth individuals raising concern about this, but this does not look like a fight that we want to make an effort to really associate ME/CFS with and it's easy to see how doing so could make things worse and be presented as ME/CFS patients fighting to defend quackery.

 

[alex3619]

presented as ME/CFS patients fighting to defend quackery.

This is a risk, yes, but I wonder if the claims presented in the final episode, which I have not seen yet, are themselves quackery. The show is against some quackery, and for other quackery?

 

[Trish]

This is a risk, yes, but I wonder if the claims presented in the final episode, which I have not seen yet, are themselves quackery. The show is against some quackery, and for other quackery?

The final episode, which has the theme of 'recovery' is unfortunate in that the patients who were claiming some level of improvement had been using some of the worst quack 'treatments'. The quacks involved will be rubbing their hands with glee at the free advertising.

The show makes no comment about whether the treatments used are quackery as far as I remember. It didn't distinguish one treatment from another and say which are more quack than the other. Apart from repeatedly using the doctors who had not seen the patients and said all the conditions are psychosomatic, which I guess implies that all the treatments are quackery.

One of the people treating one of the patients told her to her face to keep doing the treatment and was encouraging that it was working, then when she wasn't there said to camera that he was using the placebo effect and how important and powerful it is when the condition is psychosomatic.

The takeaway message I got from that last program was that all the conditions shown are psychosomatic, so any quack treatment is as good as any other if it persuades the poor deluded patient it's working, since their illness is all in their heads.

The one exception, I think, was Jamison, who was not in any of the programs about treatments because he wasn't doing any quack treatments. He just appeared briefly again in the last program included with the others with the 'psychosomatic' voice-over, and a statement that he is going to try the treatment of the doctor who had visited him.

 

[Luther Blissett]

But what the director has chosen to do instead is to turn it into a freak show, with horrible jangly music and endlessly repeated statements to camera and voice overs while showing pictures of the patients, by some doctors and psychiatrists baldly proclaiming that all these people, who they had never met, have psychosomatic symptoms.

This.

I don't care if anyone in the documentary was sympathetic, rational, likeable, or a complete shit. That is all beside the point. They did not consent and do not deserve to be treated as freaks. Some of them will now be met in public by people and mocked to their faces.

I am in total solidarity with them, and support them in their complaints.

They have been abused, in public, for money and fame.

 

[Pechius]

The more I see about Afflicted and people's response to it, the more I think that it would be best for ME organisations to give it a wide berth. I do not see anything to be gained by tying ME advocacy to it, and a lot to lose. It sounds like a number of the people featured made unreasonable claims about their health, and that they were presented in a way that means many viewers dislike and distrust them. From the sounds of things there were unethical aspects to the production of the series, and I expect that it is going to do some real harm. It could be worth individuals raising concern about this, but this does not look like a fight that we want to make an effort to really associate ME/CFS with and it's easy to see how doing so could make things worse and be presented as ME/CFS patients fighting to defend quackery.

I agree, especially, given that many people who comment on reddit, etc are actually saying that Jamison is the most legitimate patient and some even know that ME/CFS is a real and serious condition. No need to make ourselves look crazy by fighting something that we don't necessarily need to.

 

[Dr Carrot]

I agree, especially, given that many people who comment on reddit, etc are actually saying that Jamison is the most legitimate patient and some even know that ME/CFS is a real and serious condition. No need to make ourselves look crazy by fighting something that we don't necessarily need to.

I agree. I appreciate that I’m in the minority here of having broadly enjoyed the series while recognising that it also have some serious problems. But I do think that tweeting every single person who’s watched it and tweeted about it is counter productive. If someone had an audience, we should challenge them. But if they’re just an ordinary member of the public then I think we as a community should let it go, some of the responses I’ve seen will likely only cause more harm and belief that we’re all insane.

Maybe a better advocacy tactic would be to simply group up all the tweets that show ableist attitudes, and attach them to an email to Netflix / the producers saying “look at these responses and how damaging they are”. I’m not sure engaging in a big campaign about it is particularly helpful.

 

[Trish]

I agree, especially, given that many people who comment on reddit, etc are actually saying that Jamison is the most legitimate patient and some even know that ME/CFS is a real and serious condition. No need to make ourselves look crazy by fighting something that we don't necessarily need to.

I agree it's not something advocacy groups should take up as a big public fight. Most of the series was not about ME. But I also think it's worth protesting to the film makers that the portrayal of Jamison in particular should not have suggested his illness was psychosomatic. And having filmed ME scientists and doctors and choosing not to use them in the films.