Netflix "Afflicted" - ME included

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

 

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 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?

 

@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
https://twitter.com/user/status/1029208217442648064

 

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.

 

https://twitter.com/user/status/1029239491037421568


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

 

@JenB

 

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.

 

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.

 

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

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

 

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....

 

@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.

 

(The first post is about Prof. Montoya)
https://twitter.com/user/status/1029419249029140480

 

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.

 

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?

 

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.

 

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.